What Is the Invisible Burden of School Accommodations?

Getting K-12 accommodations for neurodivergent kids is hard.

When my kids were first diagnosed with neurodivergences (just like me, their mom), so began my ride on the endless carousel of testing, meetings, and follow-ups to make sure that my kids were getting the support they needed.

Source: 小满 郭 / Pixabay

What an IEP Meeting Is Like

In K-12 public school, the process of getting accommodations requires a school meeting to create an “Individualized Education Plan,” or IEP, under the Individuals with Disabilities Education Act.

IEP meetings, I can attest, are the worst.

First, you must prove that your kid is disabled. For neurodivergent kids, this proof is expensive testing.

At the meeting, the law requires the attendance of one of the child’s teachers, one EC (“exceptional children”) teacher, an administrator who can implement the IEP, and a psychologist or similar who can “interpret the instructional implications of evaluation results”— often a school psychologist. And the parents.

At one particularly awful meeting in which I could barely get a word in, the administrators, teachers, and the rest spoke about my child as though he were a stranger to me.

I felt like there was nothing I could do.

As a result, my kids did not get the accommodations they needed. My kids’ teachers didn’t educate them, but rather isolated them, humiliated them, and ignored their reports of bullying and other suffering.

Part of the problem, as I explain in my book A Light in the Tower: A New Reckoning with Mental Health in Higher Education, is the structure of accommodations themselves.

I write that “accommodations are based on the premise that disabled people are excluded as a natural state of affairs.”

Exclusion is built in to the way accommodations work. As I explain, “To include an individual disabled person, an institution must make unique, individual changes for that person”—that is, accommodations.

If all people, including neurodivergent people, were truly included in a community, accommodations would not be necessary because the community would adjust for all of its members. But we don’t adjust. We “accommodate.” Sort of.

The Cost of Accommodations

Accommodations are expensive—for parents and neurodivergent children.

First, there is the psychological testing to prove that a kid needs accommodations. Testing can run into the thousands of dollars, and it must be repeated every few years.

Sometimes schools will pay for it. Most of the time they don’t.

Then, every year, there must be an IEP meeting for every neurodivergent student, and sometimes one or more during the year to check on progress.

I had two kids in public school, so I had usually four meetings a year, one at the beginning and one at mid-year. The administrative labor that went along with them was immense: scheduling, paperwork, teacher communication, and more. So was the cost.

How so? For example, the amount of time I spent in school meetings, both with administration for IEPs and with individual teachers who called me in for “emergency” meetings, directly affected the amount of time I could spend working.

The amount of time I spent filling out school paperwork, writing emails to school, and answering phone calls from school was time I couldn’t do those things for my job.

This labor, and its cost, is invisible to people who do not understand how one must constantly negotiate for accommodations.

Disability expert and professor Margaret Price writes in her new book, Crip Spacetime, that disabled people, even those with accommodations, “negotiate costs almost constantly.”

Price’s book is set in the context of higher education, but her observations apply in the workplace, in public access, and, as I write here, in K-12 education.

Price points out that, “contrary to the official narrative of disability access,” the “negotiations have no end.” What official narrative? It goes like this: “Identify problem > request accommodations > implement accommodations.”

Education Essential Reads

30 Million College Grade Records Reveal the Power of Names

The Deeper Agenda Behind Social Emotional Learning

But that’s not how it works.

We, as a society, might like to think that disability accommodations are neat and simple, but they are not. They’re complicated and put an immense toll on disabled people.

As a parent, not only did I have to negotiate the IEP process, but also with my kids’ teachers to help them understand how the accommodations work in the classroom.

The Emotional Toll of Accommodations

Price describes the emotional cost of seeking accommodations. She writes that, in a research study she conducted, “the majority of interviewees found the process of seeking accommodations emotionally difficult.” They described it with words like “devastating.”

Devastated. That’s how I felt after every IEP meeting. After every conference where I had to explain the IEP to a teacher.

For example, one teacher called me 5 or 6 times a quarter because one of my sons “refused” to do his work.

I would arrive at school to find him sobbing as he explained how the teacher got angry at him when he was confused and anxious.

I explained his IEP for her. Dyslexia. Anxiety. But she insisted that because he was intelligent, he should be able to “overcome” these “problems.”

She was so wrong. But what could I do? I explained her mistakes to her, but she kept making them.

Then I asked myself, “Can I leave my child in the hands of a teacher who makes him feel terrible about himself?”

Price explains that sometimes the cost of accommodations becomes so high that disabled people “withdraw.”

After too many negative experiences, we needed to protect our children. We withdrew from “outside school” and started homeschooling, in which our children have thrived.

We are lucky that we can afford to homeschool. Not everyone can. But homeschooling was not a “choice” we made. We were forced to withdraw by a system that doesn’t accommodate neurodivergent children—despite what the law says.