Kari Schemenauer’s daughter was diagnosed with juvenile arthritis in August, just before the start of school. Still reeling from the diagnosis, she wasn’t really sure how to tell the school about her daughter’s disease.
“People warned me to be careful who we told at schools, that sometimes if a child is labeled it can have a negative connotation, a bias against the child as being extra work for a teacher,” recalls Schemenauer of Cincinnati.
Fortunately, that wasn't the case. While initially she elected to just send in a note with the doctor’s advice that her daughter could participate and was to be “self-paced,” a wrist injury followed by a flare up required that the family get everybody at the school on board.
“The school district has been great,” reports Schemenauer. “We have received the support we need and we do not feel like we would be rejected if we needed more. Everybody has stepped up and assisted.”
Trust Each Other
The Schemenauers’ story illustrates how important it is for open communication to exist between parents and the school. Realizing that both the parents and the educators want to act in the child’s best interest makes working together easier.
“Nobody wants what is worst for the child,” says Liz Delmatoff, 504 coordinator and school counselor at George Middle School in Portland, Ore. “People need to assume that parents love their children and teachers love their jobs.”
From the school nurse popping her head into art class to make sure a child with hip involvement is not sitting cross-legged on the floor to a teacher who sends a student to run an errand to ensure she her knee stiffness doesn’t worsen, examples of proactive teachers abound.
“Your heart tells you that people are kind. I don’t know that many people that would go into teaching if they didn’t love children. It just doesn’t pay enough,” reasons Delmatoff. “A reasonable, loving, caring teacher is, of course, going to casually make accommodations.”
While most school accommodations for children with mild disease can be casually handled, professionals advise that a formal 504 plan should be established, even for children who have mild or well managed arthritis.
When creating a plan, it's important for parents to approach the process with reasonable expectations and for educators to enter the process with an open mind.
“It is a funny situation. With an IEP [Individual Education Plan] extra money follows for the school, but 504s are an unfunded mandate,” meaning that the school is not provided with any money to assist in the creation or implementation of 504 plans says Delmatoff. “Have parents be aware of what is a reasonable accommodation. A lot of times children are already getting more accommodations than the parents realize.”
While tight budgets and understaffed schools can introduce additional stresses to the planning process, schools are mandated under Section 504 of the Rehabilitation Act of 1973, a federal civil rights law, school districts are required to provide qualified disabled students "reasonable accommodations" necessary to ensure access to all public school programs and activities.
Accommodations vary by the individual child’s needs, severity of disease and location of affected joints. Frequently, though, arthritis-related accommodations are inexpensive and relatively nondisruptive to implement. Common accommodations include not sitting on the floor, extra bathroom breaks, modified pencils, use of an elevator instead of stairs, walking instead of running during PE and excused morning tardiness.
Parents can play an important role in informing educators both about arthritis and about simple accommodations. They also know their child best and must communicate with educators about the child’s level of disability and any variances to it as well as about their child’s feelings about her disease and necessary accommodations.
“My daughter was the type of child that didn’t want attention or special privileges for it,” says Sandy Natarelli whose daughter, now a senior in high school in Connecticut, was diagnosed at 18 months. “She didn’t want her friends to know she had arthritis. We worked directly with the teachers [about that].”
Natarelli advises parents to remain in one on one contact with teachers and to remain vigilant in knowing how the classroom is set up, particularly in elementary school when younger children remain in the same class most of the day and may not be as able to communicate their needs or how they really feel.
“In a lot of cases peers don’t even know an accommodation is being made because it is done in a way that is sensitive to the child,” adds Delmatoff who has been an educator for more than 25 years. “If we know a child can’t sit crisscross applesauce, we can change the way we do circle time. A teacher might say ‘Time for you to join me. You may sit in a bean bag, in a chair or on the floor, whatever is comfortable for you. Now all eyes on me.’ You would not know it was specific to that child.”