How to tell the school of your child's eating-disorder needs: template for a 504 Plan • Eva Musby

Here are tips to get your child’s school to support your child while they have an eating disorder. The 504 plan is for the US but the template below will be useful wherever you are in the world.

The 504 plan should help your child with their schooling in the US

Contents show

The United States makes it a legal requirement for schools to support pupils whose health condition would otherwise provide a barrier to learning. This is done through a "504 plan".

This matters a lot to your child’s treatment for an eating disorder. You need school staff to understand your child’s needs — they might come in late after a difficult breakfast, they might have to be kept off sports, arrangements will have to be made for meals, etc.

I brought my document to the table and rather than asking for things, I came in saying, "Here’s what an eating disorder is like, and this is what we need."

Does my child need a 504 plan, when they have an eating disorder?

A 504 plan will support you if the school is not able or willing to make accommodations for your child. If all is going well, you probably don’t need a 504 plan and you can keep things relatively informal. Indeed, in any country, schools are doing fantastic things in partnership with parents and students, without anyone every mentioning the law.

Either way you will need to communicate your child’s needs with the school. What follows will help you to do that, whether you go down a formal or informal route.

How do you do a 504 plan: an example from a dad in the US

I’m going to give you an example of how you, as a parent, can action this plan. Gratitude to the US dad who allowed me to share his template. Also gratitude to the (highly recommended) parent group FEAST to which he contributes so much of his expertise.

"Our school was great. They said, "We’re here to support you, we just need to know how to do it."

What about other countries?

Template for a 504 plan - student with an eating disorder — Write down what you want the school to know

This dad’s template makes so much sense, I bet it will help you, wherever you are in the world.

If your school refuses to problem-solve for your child’s benefit, your country’s laws may have something similar to the 504 plan. See my post "Is your school supporting lunch? For pupils with an eating disorder, it must". There I list measures for other countries — especially the UK — as I learn about them.

What is a 504 plan?

This article by Understood.org gives a good explanation about 504 plans in general.

And parent expert-by-experience Jennifer Denise Ouellette (often known as ‘JD’) explains here why such a plan may help you when your child has an eating disorder.

How to get your school on board

The dad who gave me his template recommended that you ask for a meeting with the school, give everyone a copy of what follows, and read it out point-for-point.

He points out this will help you, as a parent, set the agenda, and be confident, clear and in your power. You are after all your child’s advocate.

OK, it’s time for me to show you what this dad used. You have his permission (and mine) to copy and paste and adapt and use for yourself.

A template you are welcome to use

Dear [school name] Educators,

Earlier this year, we made the decision to pull [child’s name] out of school for the remainder of the academic year due to her hospitalization and medical complications. While unexpected, this was an easy decision to make for us because her life literally depended on it. As a family, we relocated to San Diego for four months, which comprised the bulk of [child’s name]’s hospitalization earlier this year.

As you know, [child’s name] is recovering from Anorexia, with a secondary diagnosis of ARFID. Eating disorders are anxiety disorders that have a serious impact on physical health, cognition and psychological well being. EDs also have the highest mortality rate of any other mental disorder (after opioid overdose), and the risk of suicide is extremely high among ED sufferers.

Most of us have some kind of mental image associated with EDs. For many of us, it may be Karen Carpenter or some other excessively-thin celebrity; for others, it may be the image of any too-thin girl staring at the mirror worrying about being too fat. Many of us were also trained to think about these images within the context of emotional problems–troubled girls who “need to control things” and used ED and thin-ness as a desperate attempt to “be heard” in response to trauma, family dynamics, and other negative psychological factors. During [child’s name]’s treatment, however, we learned that most of what we thought previously about eating disorders was, at best, only partially true; other pervasive misconceptions we held were just plain wrong.

What is not commonly known, for example, is that researchers now recognize that genetics and physiological factors (metabolism, specifically) appear to play a much more prominent role in ED–perhaps as much as 60% of the occurrence of any eating disorder. And, perhaps most surprisingly, it is entirely possible for a person within a so-called healthy weight range to be at a much higher physical and psychological risk than someone who is outside the range. Research suggests that the occurrence of Anorexia within a “normal” or “healthy-looking” body may be as high as 30% of all cases.

What we need educators to know is that for someone with an eating disorder, weight restoration and the physical appearance of a “healthy” body does not mean the eating disorder is no longer present. The best case scenario for recovery is 1-3 years, although some will suffer for much longer. The best outcomes happen when EDs are treated intensively and while the affected person is still young, which is why it is important for us to focus on her health over her academics. Although [child’s name] may appear physically well, the psychological aspect of her recovery is still very much ongoing. Care must be taken to support her as she continues to transition back into school and social activities while still remaining fully engaged in her recovery.

[child’s name] suffers from a social anxiety disorder, which is not uncommon for those diagnosed with ED. Her anxiety attacks increased dramatically in concert with her treatment for ED, which is also typical. Since then, however, such attacks are growing less frequent as she recovers. These attacks are not something she is physically capable of keeping under control. As parents, our goal is to manage her environmental stressors carefully while still allowing her to experience the struggles, trials, and day-to-day adversity that help to build an active, resourceful, and robust mind. As educators, we need you to be aware that she is still at a very high risk of ED relapse. There may be times when her anxiety overwhelms her, and she will need to be excused from class and provided a quiet space to de-escalate.

Because [child’s name] is a high achiever, she cares very much about grades and being seen as successful by her teachers. We are working hard to refocus that energy towards her recovery, and have had to make some adjustments to the so-called normal demands of her education. We need to be very clear here: [child’s name] is still recovering. She is not being lazy or trying to find an “easy way out”, nor are we “wrapping her in cotton wool”. We fully appreciate that as educators you want your students to reach the highest level of achievement of which they are capable, and we appreciate that you recognise and encourage [child’s name]’s academic abilities.

At the same time, we also need you to know that for a student like [child’s name] this can come at a great cost. Even if you have not met her yet, you probably already know that at times she can put forth an almost obsessive amount of effort into her schoolwork. She is also a “pleaser”, so she highly values your opinions of her. Unfortunately, eating disorders have a tendency to use those traits to the detriment of a child’s own well being. Please be assured that as her parents, we are very active in making decisions that are in the best interest of balancing her academic pursuits while maintaining her physical and mental health. If you ever have any questions or concerns about her academic performance, please address them with us first before discussing them with [child’s name].

[child’s name]’s anxiety and ongoing physical recovery mean that there may be some days where she is feeling too overwhelmed or unwell to attend school. At this time we do not anticipate this happening with regularity, and it may not happen at all. If you have concerns about her ability to complete tasks or keep up with coursework, please contact us so we can come up with a reasonable plan.

Lastly, please be mindful not to address any comments or concerns about physical appearance or emotional regulation directly with [child’s name]. Please speak directly with us, or notify the principal so that any issues can be addressed through direct communication with us rather than through [child’s name].

Many thanks in advance for all of your attention and assistance.

Kindest regards,

[parent name]

[date]

Accommodations

[child’s name] has been diagnosed with an eating disorder which requires ongoing treatment, medical monitoring and the following accommodations:

[child’s name] must be permitted to carry food with her throughout the school day. She is on a medically prescribed nutrition plan that requires both a morning and afternoon snack in addition to lunch. Her snack food must NOT be limited to “healthy” fruits and vegetables and may include cheese, yogurt, nuts, granola, dark chocolate or any other foods containing the fat / cholesterol needed to support brain growth and development.
[child’s name] must be excused from height, weight and BMI screening done at school.
[child’s name] may be excused from the requirements of PE as needed / directed by her treatment team.
Depending on her ability to complete her prescribed nutrition plan at school, [child’s name]’s treatment team may require that she eat her morning snack and lunch (to completion) under adult supervision, which may include a school nurse, teacher, school staff, or a parent in whatever arrangement best supports [child’s name].
[child’s name]’s nutrition needs may at times necessitate a late start to her school day since she must complete breakfast at home before school.
[child’s name]’s treatment needs may at times necessitate release time away from school in order to provide ongoing access to treatment specialists.
[child’s name] may require homebound instruction on an intermittent basis if her nutritional requirements and health cannot be safely maintained during regular school attendance.
[child’s name] must be excused from any class curriculum that addresses nutrition, body size, and weight topics, including documentary films (Supersize Me, Fed Up) and / or other health, science, consumer science, mathematics, or any other curricula that involves cooking, calorie counting, logging meals, et cetera. Likewise, [child’s name] may be excused from any class curriculum that addresses body image, body size, self-image, characterizations of “unhealthy” relationships between emotions and food, et cetera.
[child’s name] must be excused from any class curriculum, guidance, or educational materials which make a simplistic distinction between “good” and “bad” foods in a misguided effort to help all children make “good choices” without regard to, or knowledge of, any particular child’s individual needs.
As needed, [child’s name] must be temporarily excused from any social activity, function, or exercise that results in an overwhelming feeling of anxiety, and she must be provided a quiet place to de-escalate in response to any such situation.

That’s the end of the template.

More real-world tips about your meeting with the school

The father who provided me with the above made a few more useful points:

I know that a lot of the people sitting down at the table have their own ideas based on pop culture etc, about what eating disorders are, and I want to dispel that right up front, which is why it’s at the start of the document.
Schools differ. Some are happy to have a discussion and then write things down. Others have their own forms, their own paperwork. Then your child’s needs are discussed, and then formally written down. "It can be super-complicated, quite arcane." Bringing your own document can help circumvent that.
Sometimes the people there, they work at your kid’s school but you don’t know them. And they go to many, many meetings like this, and so sometimes they are utterly… shall we say… disinterested.
I’ve heard of some schools in the US that were hard-line, and basically said, "We’re not able to do anything, you’re on your own." I’d say, all the more reason to go in as an empowered parent.
So you go in there and say, "This is what’s needed for my kid". I wanted to put the problem on the school to figure out how to accommodate our needs. Bringing a document to the table empowered me to do that.

When it’s a ‘No to everything’ from the school

Wherever you are in the world, whatever the laws, there are schools that say ‘No, you’re on your own’. You can choose to fight them with the law, or perhaps you can recruit the help of social services or educational psychologists or your treatment provider.

I imagine that if your document makes clear request that are likely to be do-able — you’re not asking for the moon — school staff are more likely to relax and work out solutions. Hey, right now maybe all you need is permission for your child to get out and meet you at lunchtime. Or maybe you’re asking for them to break one rule: move your child back to their favourite maths teacher so as to reduce their anxiety.

Instead of using the hateful ‘slippery slope’ argument ("If we allow your child to do X, we’ll have to allow if for all students"), the school may start to feel quite proud of how they supported one individual to reach their full potential.

My own daughter’s primary school was extremely proud of their contribution, and rightly so. When she had a relapse in high school, we dealt with a Head of Year who listened to my requests, nodded, and just got them done. Simple.

I would love to gather examples of great accommodations made by schools. Feel free to write these in the comments below. Years ago, all I heard from parents was negative. Now I mostly hear good stories: fantastic head teachers, staff who really listened, a school already well-informed about eating disorders, who is used to the type of requests you are making. I really hope that this is becoming the norm, and that the schools who put up unreasonable obstacles soon realise they need to improve.

"I don’t want people to know"

I’ve always taken for granted that a school will keep my child’s information private. In the UK, where I am, my conversations were with a very supportive Head of Year, and we agreed who would be told what. This helped my daughter to cope as she didn’t trust all teachers to be non-judgemental. I’m told that in the US, privacy is assured through the Family Educational Rights and Privacy Act.