The Long Road to 504

[ajasfolks2]

Working on some "History of 504 for Food Allergy" information.

Best place to start is right here. 


While many of us here (who were formerly of another forum, way, way back) had been discussing 504s for years prior to the following post, in 2005 this was a thread-starter that brought on 500+ responses and was truly a game changer:

By Gail W on Sat, 05-14-05, 15:16

... a disservice to YOU, YOUR SCHOOL, and, above all else, YOUR CHILD.

Having just been through the process of obtaining a Section 504 Designation for my 5th grade daughter, I have developed very strong opinions about why this designation is vital for my child. In retrospect, I wish I had requested this protection for my child before she started kindergarten. And I have learned that having NOT requested the Designation upfront created a different set of problems that I had to inevitably address.

I hope this thread will address the fears of parents who are considering whether or not to go the "504 path". I hope that parents will share their experiences in order to help other parents who are wrestling with whether or not to pursue a Section 504 Designation for their child... or those parents who are beginning the 504 Designation process... to help them better understand that a 504 designation might not be easy, but it is not to be feared.

I came to my school district with the idea that 504 was a confrontational process, and this was confirmed by my conversations with my School District. So I waited six years to request this protection to avoid this (for us, inevitable) confrontation. This was a mistake and my child ultimately suffered because of it.

I hope others will chime in to help explain the beauty and service of a Section 504 Designation for our children. It might be helpful to write our testimonials in a consistent format if possible. I will write my comments in the format of my mistaken "myth" about 504, and why/how the reality of 504 better serves my child.

I try to add to this over time, as I hope others will too. Please add your experience if you also bought into a myth that has already been stated. And please also add to the myth(s) you experienced.

Myth #1: Requesting a Section 504 will label me as a "difficult parent" and the School District won't want to work with me.

I found the opposite to be true. Having the 504 Designation made it clear to everyone why the school district needed to address accommodations. It provided the correct motivation for the school to proactively address accommodations and removed the onus of responsibility from me (parent) to the school district. By squarely defining the school district's accountability, it liberated me from the my repeated requests to the SD. When the responsibility was mine to identify and advocating for specific accommodations, I felt like a "pest" and I was much more llikely to be labeled "difficult". Now that the SD has acknowledged that their student has a legal right for protections, they take more responsibility to identify and address accommodations. I am viewed from a completely different light.

I realized rather late that by not having the Section 504 Designation, I also was left to negotiate with other parents directly. Before the SD understood that 'related services' applied to ALL activities, they directed me to coordinate activities with the other parent volunteers. This will always put you/me in the terribly awkward position of negotiating with other parents. THIS WAS A HUGE MISTAKE, and I find it impossible for a parent to not to have some sort of negative fall out by having been placed in this erroneous position.

A Section 504 Designation allows a parent to foster healthy interactions with other parents and staff. You become the "supportive, cooperative" parent that assists other parents in implementing the School District's accommodations.

Myth #2: It is better if the school staff find me to be cooperative and likeable. It's better to avoid conflict with staff because if the staff doesn't like me, my child may not be treated as well by the staff.

Again, I fund the opposite to be true. Sorta. I think it is important to cooperate with staff. But what happened was that by not having the 504 Designation, I was placed in the incorrect position of directly negotiating with school staff and parents. This is just a losing position for any parent to be in.

The better and appropriate position is for the SD to acknowledge to its staff that this child is legally entitled to accommodations, and that these are not directly negotiated between school staff and the parent, or parent/parent. They are accommodations are created by a "504 Team", are implemented and enforced by the school administration. It removes you from on-going negotiations directly with your teacher/principal, and again liberates you to a more appropriate role of supporting the teacher/school/parents in the School District's accommodations for your child.

Myth #3: My School (School District) is cooperating with me and I have the accommodations that I want. A 504 is not necessary.

Again, I found this not to be true. My school staff cooperated and had a very good IHP in place. I always felt the uncomfortable strain that they "were doing so much already" and that I somehow didn't appreciate this because I was asking them to address other new accommodations as they became apparent. I always felt beholden for the attention and the good accommodations that I had negotiated with them to provide. They seemed to want to create an IHP and then they "were done".

The 504 Designation maintains the School District's accountability to proactively create the accommodations. This accountability and ownership is necessary for you to have a good, healthy relationship with your school community.

[ajasfolks2]

And some of her follow-ons:

Myth #4: Things have been going great. Why rock the boat with a 504 request?

Maybe you'll find that the 504 Designation really didn't make any difference in the accommodations that your School District provides. But maybe during the 13 years of your child's education you'll find out, as I did, it does. In our particular case it happened to be that my School District did not believe that they needed to provide any accommodations in their extra-curricular programs "that were fee-based." As my DD enters Middle School, these types of activities are very important to her. Obtaining the 504 Designation showed the SD that they indeed were required to provide the necessary accommodations that would allow her to participate.

And I absolutely agree with ryan's mom excellent point regarding the permanency of school staff. Not only is it inappropriate to base your child's accommodations on your ability to forge a good personal relationship with individual staff members, they leave. During our 6 years at the K-5 elementary school, we've had 7 primary teachers (one left before the end of the year and a new replacement teacher was hired in her place), 4 school counselors, 3 school nurses, 2 Assistant SuperIntendents, and 2 Superintendent of Schools. Our school principal was the only consistent player.

Myth #5: If a School District is really resistant to a 504 Designation, the fight might not be worth it.

I almost think the exact opposite is true: if your School District is resistant to considering a Section 504 for your child, consider it a red flag. I think that if your SD is reluctant or outright objects to a Section 504 designation for your child, then you will encounter problems down the road no matter what. You need to ask yourself: why is the School District not wanting to be accountable?

[ajasfolks2]

By Gail W on Sun, 05-15-05, 00:15

Okay that leads into

Myth #6: School Districts are familiar with Section 504. My School District has an administrator who is the District's '504 Compliance Officer'. This person knows all about how Section 504 works, handles complaints in the school district about 504 violations, and will help me regarding Section 504 for my child with food allergies.

This one was really, really hard for me. It infuriated me that the administrator (Assistant Superintendent of Schools) assigned by the School District to assist parents/students regarding their rights under Section 504 was the very person who told me erroneous information. The 504 "compliance officer" wasn't in compliance with the 504 law. I still have a hard time getting my mind around this, and can't help but feel anger still.

I truly hope that your school district is familiar with how Section 504 applies to children with life-threatening food allergies. I know of other moms locally who breezed through the process with their school districts and are shocked by my experience. I even remember reading a School District policy (can't remember which state or school district) that stated that any child identified with anaphylaxis to foods was required to have a Section 504 plan.

Myth #7: There are lots of experts who will help you with obtaining a Section 504 Designation for your child.

The very hardest thing in all this for me was that I realized I had to do this myself. I didn't want to do this. I was far more comfortable using my time to try to find someone else, an expert of some kind, an undeniable authority who I'd hire to do this for me. A parent advocate, an attorney, my DD's allergist, another expert allergist, a school board member who would take it on. There had to be someone out there who would knew what to do, and I spent tons of effort trying to find that person.

Then, when I couldn't find that 'expert authority' to represent and work on my behalf, I turned to my husband. For a long time I wanted him to be equally as involved in this process as I was, or better yet, take the leadership role so that I didn't have to. I made piles of materials to read/review so that he could help me connect the dots. He is a physician, and I wanted him to become the 'expert' I was searching for. It caused some friction in our marriage.

I felt very frightened that there was no one who would do this for me.

Thank God for 2 people I 'met' here on pa.com who acted as my coach. One in particular was a God send.

[ajasfolks2]

By Nutternomore on Mon, 05-16-05, 06:29

Myth #8 - 504 plans are only for those who want significant risk reduction accommodations, like having the school go peanut-free. Also, they are a static document that once signed, is cast in stone.

I have found that using a 504 plan has been extremely flexible in meeting the changing needs of DS as he has grown older. In kindergarten, we instituted a grade-wide restriction on peanut/tree-nut products for the classrooms, and he was assigned a full-time aide. In 1st grade, we scaled back to a peanut/tree-nut free classroom, plus a class-wide peanut/tree-nut free table in the cafeteria, with wipes upon exit. For 2nd grade, we plan to scale back use of the aide to just the highest risk times (entering school, recess, and lunchtime), and DS will begin to take responsibility for passing his Epi-pack to his specials teachers (e.g. Music, Art) when he leaves the classroom.

The 504 plan is adjusted to meet these yearly changes in accommodations, yet is also perserves the ability to keep DS safe - there is also an accommodation that states that if the plan isn't working (i.e. he is having reactions at school during the year), that the 504 team must meet at that time to review incidents and determine what adjustments should be made to the plan. So, a 504 plan is really a living document, that can be changed as needed to ensure that equal access to education is achieved.

Along the lines of what Ryan's Mom mentioned - just like school administration staffing, the thing about food allergies themselves is that they are unpredictable; also, children can develop additional food allergies as time goes on. By having a 504 plan in place (thereby protecting your child's civil rights), I believe it makes it easier to adjust for changing medical circumstances.