Andy's sixth grade school photo. He enters his senior year in September 2015. How times flies!
(Note: Sections of this blog were excerpted from the piece I wrote for WebMD in 2013. You can read the full article here.)
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 like psoriasis and psoriatic arthritis, this road can be very bumpy.
Thankfully, having a 504 Plan for your child can help alleviate some of these challenges. And, as a parent, doing your homework in the summer can help make the first day back to school that much easier. Gather your facts and put your request in now with the school board or on the first day of school with your principal. This way, you won’t lose any (or perhaps very little) time in getting the accommodations in place.
We started Andy’s 504 Plan process in third grade. At that time, it was apparent Andy needed extra time and help with writing on standardized tests. 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.
(More details about the ups and downs of setting up Andy’s 504 Plan can be found on the Arthritis Foundation’s Kids Get Arthritis Too website.)
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 needs of each student. For example, my son needs extra time to take written tests because the deformities in his hands make it difficult for him to write more than a few minutes at time without taking a break. For others, scalp psoriasis may be a big issue. Ask that your child be able to wear a hat on days when medicine is necessary and flakes are at their worst. A hat may also help deter scratching which can make psoriasis worse.
Check out an example of Andy’s disease fact sheet; list of accommodations for elementary, middle, and high school; and medication information provided to the school.
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. The National Psoriasis Foundation and Arthritis Foundation both offer free disease pamphlets that you can download and share with teachers.
For students with multiple teachers, send an email to teachers and counselors explaining the disease and include links to the pamphlets. The more they know and understand, the more likely they are to work with you and your child for the best outcome.
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. And while Andy did not have a 504 Plan in place in first grade, we made sure to include this request when he did receive accommodations.
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.
Don't become complacent when everything appears to be good.
Even when your school gives the okays for certain accommodations, be sure to follow up to see if they are actually being followed and communicated to all parties involved. Sometimes, your child may get lost in the shuffle or the school simply refuses to follow what has been put in place. Either way, stay on it and make sure you stand up for your child.
In November 2014, I received a call from Andy’s high-school counselor who requested a doctor’s letter explaining how psoriatic arthritis impacted Andy’s daily activities in school and why accommodations were necessary. This letter was not for the school. It was for the ACT administrators to decide whether or not Andy would get needed accommodations.
After receiving the letter from his doctor – in a very timely matter, I might add – I scanned it and emailed it to his counselor. I asked him to send it to ACT and also to put it in his 504 Plan folder for the school as added documentation.
In March 2015, one day before Andy was to take the ACT test, I received from the school a letter from ACT explaining that Andy’s only accommodation is that he can take the test over multiple days, not added time for each section and not the use of a computer for the writing portion. I found out months later that Andy’s letter from the doctor was never forwarded to ACT, nor was it put in his 504 Plan file.
With the help of another school administrator, I appealed the ACT accommodations decision. This time, armed with the proper documentation, ACT allowed Andy have additional time for each section and the use of a computer for the writing when he took the test again in June 2015. Andy’s scores went up, way up. In fact, science alone increased eight points. He was now at a level where he would be eligible for college scholarships.
Had I followed up and made sure Andy's letter from his doctor was actually forwarded on to ACT, we may have avoided much confusion, frustration, and poor test scores.
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 resource to ask other parents advice and what type of accommodations they sought for their children.
The Arthritis Foundation has a webinar coming up on Thursday, Sept. 10, 2015, called “Educational Rights and School Solutions.” Participants can hear from panelists, view presentations, and submit questions. Register here to get an inside look into 504 Plans.
