School Days with Ehlers Danlos Syndrome - Got a 504?

One of the first steps in getting safe procedures in place at the schools is to work with the appropriate school team to ensure a 504 Health Plan is in place. You can bring any specialized documentation from your Doctor to the school for use in creating this plan.
If you don't have it already, print a copy of "An Educator's Guide: Meeting the Needs of the Ehlers Danlos Child" by the EDNF group, and take a copy to the school.
What is a 504 plan?
Taken from WrightsLaw, at this link, a 504 is defined as "...a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications."

Because the rules and legal process that the schools are required to follow can be very complicated to a parent who is unfamiliar with the terminology or the protocol, I recommend familiarizing yourself with Advocacy Guidelines here, and general basics of IDEA, 504 and IEP on Wrights Law, here. 

It is essential to have the legally binding documents that are relevant to your unique needs in order for the school to have access to the resources they may require to accommodate the individual situation. While there will be instances where an EDS child requires an IEP, most children will be directed the route of a 504 plan.  If disability and resulting accommodations are the only goal, the 504 plan is designed to assist. If there is an academic issue or other situation present that will require an IEP, the 504 can be worked into the IEP. 

While some schools will be very knowledgeable and accommodating of how to utilize a 504 plan for your Ehlers Danlos child, others will not have the knowledge and some schools have even given false information to parents. I suspect that this comes from lack of understanding of EDS and lack of understanding of the federal guidelines of 504 plan. Your child's teacher is not likely to be the person you need to talk to about this, so the first step is tracking down the person who represents and reviews cases. Talking with your school principal is a good place to start.

I have found that going into a school with all the specific recommendations, in writing, from the Doctor to be extremely useful. The school was unsure what to do without that information. For example, my daughter is medically excused from PE classes, unless adaptive PE can be provided for her (which, in our school, it cannot). Special accommodations can be implemented into the school classrooms or grounds, such as a wheel chair access ramp if needed. Have the OT/PT/Doctor write out what adaptive devices are needed, make copies, and take this to your school team so that they can understand what steps they will need to take. 

Exercise patience as it will take time for the school to get through their process of meetings to facilitate the plan. And keep in regular contact with your team lead and the school nurse to discuss what is working, and what isn't working. Be flexible with items that are not necessary, and be assertive with doctor advised modifications that are required. You are allowed legal council to attend meetings and help you, if you feel help is needed. We have had great success in working with our medical team and the school team, however, our daughter still gets injured by accident in school.  It is not a perfect system, but it is one we are currently all willing to work with. Under different circumstances, homeschooling may be a better option, but we are not there just yet.

Our school also provides time with an occupational therapist, though it is extremely limited.  I have not found that these sessions truly do anything to help my daughter. Instead, I look at the time with the OT as a good bridge between the school staff and the medical team. The OT / PT they assign at the school are in contact with our private OT/PT and they pass along the instructed guidance and modifications to try. They assess if those modifications are working, and they advise if changes are required.

Going to meetings for creation of these documents can be very stressful, which is why I stress the importance of educating yourself on the process, the terminology, and your legal rights as a parent. WrightsLaw is the best resource I have found for this information. If you have a better resource, please share.

We have a great school here, and I am fortunate to have so many people looking out for my daughter. Even still, the IEP/504 plan she has is absolute key to keep her safety a priority and to enable the school to modify resources as required. There are many specifics of this that I can go into, but I will save those topics for other postings.  Today, I just want to stress that the federal government program is available for your safety and use, and I encourage you to utilize it, if you fit the need for the program.