By Jaime Moy
Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.
As parents, we want our children to grow up to be happy, self-reliant people who have the tools needed to pursue their dreams. This can be difficult enough with a healthy child, but when your child has a chronic illness, this road can be very bumpy.
I’m a mom with a high-school sophomore who’s had juvenile psoriatic arthritis since kindergarten. I know that each new school year can bring worry over what challenges lay ahead: from teachers who don’t understand the ins and outs of your child’s disease, to administrators who see an honor roll student and question the need for accommodations because he is “doing just fine.”
This is exactly what happened to my son, Andy, as we started the 504 Plan process in third grade. At that time, it was apparent Andy needed extra time and help with writing on standardized tests. At least I thought so. Even with the principal and teacher on our side, some administrators thought Andy needing a 504 Plan was “just silly.” They questioned why he needed “special treatment” because he was a smart kid. What they didn’t see was a child who came home from school exhausted nearly every day from the fatigue of psoriatic arthritis. They didn’t see a child who held back the tears of pain after writing for only 10 minutes. They certainly didn’t see that making small changes on their end was not special treatment. And they did not see that a 504 Plan would create big opportunities for Andy to be successful in school.
I left that initial meeting feeling dumbfounded. I had to regroup and approach the situation from a legal standpoint. And that’s just what I did, quoting text from the law and explaining that we were not asking for special treatment. With some time, a lot of patience, and many school meetings, Andy’s 504 Plan was put in place.
Unfortunately, it wasn’t in time for the third-grade state standardized tests. But, since a 504 Plan follows the student through to graduation, Andy is able to get the accommodations needed for all subsequent testing, and even college placement tests he’ll take in his junior year. And now that Andy’s plan is in place, his yearly 504 Plan updates are easy, and staff is open to all accommodation requests.
If you’re looking to implement a 504 Plan for your child, being prepared will help you avoid some worry and administration roadblocks. Here are a few tips I’ve learned along the way:
Get a 504 Plan in place as early as possible. Section 504 is a federal law that requires public schools to meet the needs of children with disabilities the same as those without disabilities. Many children with chronic illnesses are eligible for a 504 Plan.
504 Plan accommodations vary widely based on the disease and needs of the student. For example, my son needs extra time to take written tests because the arthritis in his hands makes it difficult for him to write more than a few minutes at time without taking a break. But, a child with diabetes should be allowed to eat a snack immediately when experiencing hypoglycemia.
Educate the educators. Don’t assume teachers understand the disease and how it impacts your child’s school life. Set up a meeting with the teacher before school starts. Most educators will welcome the knowledge you can provide to make the class easier for them and your child. Many reputable health agencies like the National Psoriasis Foundation, which helps people with psoriasis and psoriatic arthritis, offer free disease pamphlets that you can download and share with teachers.
Ask your child for input. When they are little, you may need to fill in some gaps, but even in first grade, my son was able to tell me it was painful to sit on tile floor for assemblies. I asked that he be able to sit in a chair near the other students. This small change made a huge difference.
Communication is key. Ask teachers and administrators the best way to communicate with them, and whenever possible, reach them via that method. For us, elementary school teachers welcomed phone calls, but in high school, email became the primary method.
Know when to be flexible and when to be firm. Even when you think you have the system worked out, challenges will come up. Stay calm. Going off the deep end will not help you or your child. Work to reach a compromise and keep good relationships intact. There are 504 Plan safeguards in place and reminding the school of these will sometimes be all it takes to get your child the accommodations needed.
Find support. You don’t have to feel alone in a process that can feel overwhelming. Connect with other parents who have already put 504 Plans in place. Find out what worked and didn’t work for them. The National Psoriasis Foundation’s Talk Psoriasis message board is a great place to get started and ask for 504 Plan advice: And once you’ve put your child’s 504 Plan in place, share your ideas with others just starting the process.