Juvenile Arthritis | IEP | 504
According to the Arthritis Foundation, over 300,000 American children have Juvenile Arthritis. The most common type of arthritis in children is called juvenile idiopathic arthritis (idiopathic means “from unknown causes”). There are several other forms of arthritis affecting children.
Juvenile arthritis is a rheumatic disease or one that causes loss of function due to an inflamed supporting structure or structures of the body. It may or may not require accommodations or specially designed instruction at school. Kids with this disease can go into remission for extended periods of time, thus making accommodations unnecessary.
Symptoms Associated With Juvenile Arthritis
- Joint pain
- Fatigue (tiredness)
- Loss of appetite
- Inflammation of the eye
- Difficulty with daily living activities such as walking, dressing, and playing
Although physical therapy and/or prescriptions can help, students with juvenile arthritis may still have problems in school. This is because the joint stiffness and joint pain that is associated with JA is often worse in the morning, students may often be tardy or miss school days. They may not be able to perform well in gym class or classes that require fine motor skills (art, playing a musical instrument). For many children with juvenile arthritis, it may be difficult for them to even carry their books or wear a backpack.
As you can see from the list of symptoms above, it’s not difficult to connect the dots from the symptoms and how that could interfere with day to day activities at school.
Juvenile Arthritis: A 504 or an IEP?
As an advocate, my recommendation is that parents get at least a 504 for their child, as a safety net. Even if the child does not use the accommodations, it’s better to have it and not need it, than to need it and not have it.
And, it is my professional recommendation that every student with JA have something in that 504 regarding attendance. I have had a couple of clients who really did well academically, but were penalized in their grades only because of attendance. Accommodating absences should be in there.
Juvenile Arthritis Accommodations
Observe your child’s daily activities and talk with your doctor. See where the challenges are both in the school environment and your child’s capabilities. The 504 Plan that is drawn up should be specific to your child.
- Attendance: Because morning swelling and pain are often problems, children with JA often have difficulty in the morning with the simplest of tasks, such as getting out of bed or walking downstairs. Because the child may look and act fine once he or she is at school, teachers sometimes don’t understand why the child was tardy. Having an attendance plan in place can shelter you and your child from truancy penalties and grade penalties.
- Extra sets of textbooks: How many the child needs depends on the child. Some may just need an extra set at home (so they don’t have to carry heavy books back and forth) and some may need extra sets at school if they move from classroom to classroom throughout the day.
- Medication Specific Accommodations: These accommodations will be specific to the side effects that your child experiences due to their Rx. Some need permission to have a water bottle all day. Others may be taking meds that increase their appetite and they require extra snacks. Or, extra bathroom breaks. And make sure that there is a system in place that the child can just give the teacher a signal as they leave the room. It can be embarrassing for a child to continually have to raise their hand and ask to leave the classroom.
- Assistive Technology: Some kids experience joint pain in their arms and hands and have difficulty writing. Voice to text technology or a scribe might be appropriate.
- Seating: Some students with Juvenile Arthritis cannot sit for extended periods of time. Alternative seating, stretching breaks, and other accommodations may be warranted.
- Alternative PE: Ask about your child’s PE requirements and graduation as they progress through the grades. An alternative activity may be warranted. Perhaps they can maintain the proper amount of credits from attending a yoga class instead of the usual PE class. Or, the child’s PE grade should not be affected due to their limited mobility. It all goes back to that “Think can’t, not won’t” mentality. What can the child do?
Juvenile Arthritis in School: IEPs
For many students, a 504 plan is sufficient. However, if the child’s situation warrants specially designed instruction, then you want to ask for IEP evaluations.
Remember in the IEP process, you don’t ask for an IEP. You ask for IEP evaluations in the suspected areas of need. For JA students, you particularly want to pay attention to fine motor and gross motor skills, and ask for evaluations in those areas if you see issues.
What the IEP evaluations show will determine what goals and supports are in place.
I will include links below on how to get a 504 plan and how to request an IEP.
This is just a basic overview to get you started. Parents experienced in JA–feel free to email me more ideas. This post is intended for beginner parents or school staff who are not familiar with the diagnosis.