Kids with arthritis sometimes need special consideration during the school day, whether it’s being allowed to keep a water bottle on their desk all afternoon, or getting an extra few minutes to make the trek from one classroom to another.

If you have encountered resistance when it comes to getting your child’s school to make appropriate accommodations for her, you should know the law is on your side. Section 504 of the Rehabilitation Act of 1973 specifies that no one with a disability can be prevented from participating in federally funded programs – and that includes elementary, secondary and post-secondary education. Under the law, chronic conditions such as juvenile arthritis (JA) fall into the disability category.

The idea is to ensure all kids an equal opportunity to succeed at school. The mechanism for making that happen is called a 504 plan. It’s a living document that can literally accompany your child from kindergarten to college, adapting to meet her needs as they change each year – or more frequently.

Getting Started

Colleen Ryan started out with a very informal plan when her daughter Caitlin, who was diagnosed with JA at the age of 3, started kindergarten. “The school had a ‘meet the teacher’ picnic the day before school started, and I took that opportunity to discuss Caitlin’s arthritis,” she recalls.

At the end of the school year, that teacher recommended Ryan put a 504 plan in place.  “I never even thought we would need it,” Ryan says, “but as [the teacher] pointed out, administration staff changes … and teachers are different every year. In order to make sure that Caitlin would have support no matter who led the class or was in charge of the school – I needed to get it in writing. It was great advice. Sure enough, we had a new principal the next year, and again three years later.”

Enacting a formal 504 plan can be done at any point in the school year. However, if you have a diagnosis in hand, it’s best to set things up as early as possible.

The first step is to meet with a teacher or other school officials to discuss your child’s diagnosis and the need for a plan. Teachers can call such a meeting if they notice a child has needs, but that’s more common with the 504 plan’s close cousin, the IEP, which applies to students with special education needs.

In the United States, each school district sets its own criteria for meeting 504 requirements. A committee made up of school officials, parents or legal guardians and someone with knowledge of the child’s medical history, meets to review the case.

When the child is declared eligible – which can take up to a month – that same group can work to put the plan together. Setting up Caitlin’s 504, Ryan says, involved the school nurse, school counselor, principal and the teacher. “I also had the nurse practitioner from our pediatric rheumatologist attend. Most parents are not aware that if their doctor is willing and has time to attend, they can actually bill your insurance for the time to go to a 504 meeting,” she adds.

Ryan handed out copies of the Arthritis Foundation publication When Your Student has Arthritis along with JA brochures and information on Caitlin’s medications.

Good Timing

Ryan recommends contacting the school at the beginning of summer vacation to put a new plan in place for the coming fall. “Generally, staff  are on duty for one additional week after the last day of school – and they are more relaxed, less stressed and able to give you some time to discuss the situation.”

This is also a good time to update existing plans for the coming year, she notes.

Taking time to meet and talk about possible changes to your 504 plan midyear is a good idea, especially as kids get older and shift from being in one classroom all day long to changing classes during the day.

Transition years between elementary and middle school or middle school and high school are key points to look over the plan. Most schools have an orientation night toward the end of the spring semester – you’ll want to attend and scope out your child’s new school. That’s also a good opportunity to bring up the subject with new teachers.

What’s in a Plan?

As for what a plan should address, think about how your child moves through an average day and how he copes with pain and stiffness. He may need extra time for bathroom breaks, might need to be allowed to use a rolling backpack instead of a shoulder bag or be provided a space to rest near the nurse’s station when he’s feeling bad. (Click here for a sampling of accommodations often used for kids with JA.)

Wendy Gray says her son Austin, who hates to be singled out for his JA, kept a bright orange index card on his desk last year. “If he was hurting too much to keep working, all he had to do was put it on the corner of his desk.” Austin’s teacher could see he wasn’t feeling well, and give him a break.

Cooperation is Key

Even with the most comprehensive 504 plan possible in place, there’s one highly uncontrollable factor in play when it comes to making it work – your kid.

For example, Caitlin’s plan allows her to exempt herself from gym class on bad days. “If the class is told to run, and her knees and ankles and really sore – she can sit down while they run, or walk if she wishes,” says her mom.

Only problem is, Caitlin was likely to run anyway, so nobody would know about her arthritis, Ryan says.

Now Ryan lets teachers know when Caitlin isn’t feeling well and asks them to come up with creative alternatives. Instead of getting physical, she can count other students’ laps or do clerical work in the office.