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Education Concerns

Pediatric Vasculitis

Education Accomodations

It is an unfortunate reality that with a vasculitis disease there may come a time when attending school full-time or at all may simple not be possible. It is very important at times like this to stay in contact with the school and to work with the school addressing the estimated length of absence. Different time tables may make different options more feasible depending on a variety of factors including, but not limited to: grade level, time of year, state and district standards to be met, previous classes taken, and classes required to meet standards. Each case is different and working with the student’s school to come up with a plan is the best option.


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Education Concerns

It is recommended that all children/teens with a chronic disease have accommodations in place at their school to allow them to have a full academic experience despite their illness.

In the United States, accommodations are often attained through a 504 Plan or IEP and/or Home Bound Instructions. For every student with a chronic illness, federal legislation guarantees that schools must make any reasonable accommodation to allow the student to receive public education. A 504 Plan is designed for the student who can function in the general education classroom, but requires accommodations to enable an optimal learning experience. An IEP (Individual Education Plan) is governed by special education law and was established for a child who meets criteria for one or more of 13 disabilities (e.g., significant learning or behavioral disability, autism, deafness, visual impairment), and would benefit from special education services. An IEP is indicated for the child whose disability affects their ability to function in the general education classroom. An IEP can provide specialized instruction to students, which the 504 Plan does not.

If your child can function in the general education classroom but requires some accommodations, a 504 Plan is the better option. Indeed, most of our patients who have vasculitis require a 504 Plan as opposed to an IEP. More information on a 504 Plan versus an IEP can be found here:
https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plans

The following steps are needed to set up a 504 Plan (or an IEP):

  1. Document your child’s needs (diagnosis of chronic disease)
  2. Find out who the 504/IEP coordinator is at your school and school district
  3. Write a formal request for a 504/IEP plan. Email is the simplest way to start the process
  4. Follow up on your request with a phone call or email to set an appointment time for evaluation
  5. Work together with the school and your medical team to create the 504/IEP

The good news is that the professionals at the school who are responsible for these plans are experts at what they do. They will take your request, gather the necessary information and set up a meeting together with you and any additional school personnel who will play an important role in the education of your child/teen.

We suggest that you not wait until your child becomes too sick or has missed many days of school to put accommodations into place. Some children/teens with vasculitis have very little disruption to their day-to-day life while others miss school often because of doctor visits, physical therapy sessions, scheduling of special studies, etc., and/or because of the disease or side effects of medication.

As most of our children would benefit from a 504 Plan, and do not require an IEP, we will focus on accommodations which can be included in the 504 Plan. It is important to recognize that your child’s disease can be unpredictable, and how he/she feels can vary day to day. Keeping this in mind when planning for accommodations, remember to plan for the worst day your child has and the very best day. You may find your child does not use all accommodations in your 504, and that is okay. Having the accommodation in place is important.

Accommodations You Can Start With

Although this list does not include all available accommodations, you may find some of these options to be helpful for your child. At the same time, your child may not need many, or most, of the extra help options listed above. Try to work with your child’s education team to make a realistic plan that allows him/her to continue learning in-person, with an optimal performance. If circumstances arise where your child can no longer attend school, in-person, homebound instruction may be an option. 

Many of the medications used to treat vasculitis are immunosuppressants (lower the immune system). Continuing to participate in a school environment brings the challenge of being diligent in avoiding infections. Wearing a mask with a filter, carrying disinfectant wipes, and washing your hands frequently may help to keep infections at a minimum. 

Having a diagnosis of vasculitis can be isolating. Children/teens often feel they are the only ones in the world suffering from this disease. Keeping to a regular routine, including school, can help reduce the child’s feeling of isolation. Remember your child’s mental health is just as important as their physical health.  Involvement with the school counselor and seeking out individual therapy for your child may be valuable in helping your child to adjust to the potential changes and obstacles that a new diagnosis of vasculitis may bring.