The Hechinger Report is a national nonprofit newsroom that reports on one topic: education. Sign up for our weekly newsletters to get stories like this delivered directly to your inbox. Consider supporting our stories and becoming a member today.

A couple of years ago I got a call from an occupational therapist who introduced herself as a member of my son Corey’s special education team. Would I mind, she asked, if she took herself off of the roster of people providing him services?

Website for Education Post
This story also appeared in Education Post

I hadn’t realized Corey had an occupational therapist. But sure enough, when I looked at his Individualized Education Program, the legal document that outlines how his disabilities would be accommodated, there was an entry calling for 15 minutes of support a year. This was a placeholder, the therapist said, a bit of red tape.

So I said sure. Why make more work for the already overburdened?

Related: Eligible but got nothing: Hundreds of thousands of people with disabilities blocked from college aid

Fast forward to last spring, when Corey’s new special education case manager called from his new school. She was anxious to get the occupational therapy he clearly needed underway; could I provide the original evaluation she was certain had been done?

“Buried in a widely applauded court order issued by a Connecticut judge earlier this month is a landmine that’s potentially disastrous not only for that state’s 70,000 students with disabilities, but for all of the 6.5 million American schoolchildren who live with disabilities, including Corey.”

A call to the record-keepers at Minneapolis Public Schools revealed that Corey had in fact been deemed in need of OT when his primary disability, Asperger’s Syndrome, was diagnosed four years before. Corey is now 14 years old and in ninth grade. The more I learned about the long list of skills Corey could be taught for managing his sensory challenges, the more my heart broke.

Corey is the original renaissance student, curious about everything and likely to read — and write, and draw — voraciously about whatever’s captured his imagination. But school, with its buzzing florescent lights, scratchy pencils and punishing passing times, wore him to a frazzled nub by lunchtime. I now know we could have addressed it, and didn’t.

I’m telling this story now because buried in a widely applauded court order issued by a Connecticut judge earlier this month is a landmine that’s potentially disastrous not only for that state’s 70,000 students with disabilities, but for all of the 6.5 million American schoolchildren who live with disabilities, including Corey.

Related: Students on the autism spectrum are often as smart as their peers — so why do so few go to college?

Much of the decision was a clarion call for more equitable schools. In declaring Connecticut’s school funding system unconstitutional, Hartford Superior Court Judge Thomas Moukawsher pronounced universally glowing teacher evaluations “uselessly perfect” and called the state’s poor school rating system “little more than cotton candy in a rainstorm.” But then, wittingly or not, the judge blew a dog whistle. In the name of fiscal rationality, he wrote, schools should not be required to always “make expensive, extensive, and ultimately pro-forma efforts” to educate children with the most profound disabilities. A few pages later he dropped the other shoe: The cost of special education threatens to swamp school finances in general.

“The cost of special education is staggering,” the judge wrote, citing two urban superintendents who testified to being forced to raid their general funds to pay unreimbursed costs. “In many places over 20 percent of the money spent on schools is spent on special education.”

For most of us, advocating for a child with special needs means constantly rubbing up against questions that were supposed to be settled by the Individuals with Disabilities Education Act (IDEA), the most recent iteration of the 1975 civil rights law that first required schools to accept students with disabilities and to provide an education that as closely as possible resembled that of their peers.

Related: My son has Asperger’s and wants to attend a rigorous college — Why shouldn’t he?

The law is clear: No child may be deemed too handicapped to work toward her highest potential. And for good reason: In an egalitarian society, who gets to put a value on another’s worth? Who gets to judge those dreams and aspirations?

Spend any time at all with parents navigating special ed and you’ll acquire a trove of stories about children who far exceed what was predicted by so-called experts.

I have a colleague who was told her 3-year-old, who had multiple disabilities, would never be verbal. An adult now, you can’t shut him up, to use his mother’s words.

I have spent time in classrooms with young adults who use brand-new technologies to communicate —years after they might have been written off.

Indeed, the fact that Judge Moukawsher took pains to describe the case of an outlier — a child with almost no cerebral cortex who could respond to light — sets up a straw man.

Students with multiple disabilities made up just 2 percent of U.S. special ed students in the 2013-2014 school year, while a whopping 35 percent are classified as learning disabled.

Twenty-one percent have language impairments and 13 percent a health impairment. In fact, students with autism — a diagnosis whose mushrooming numbers is the subject of frequent headlines — comprise only 8 percent of the special ed population.

And yes, the cost of serving students with multiple and profound disabilities can be shocking, often well into the six figures. A student who needs transportation to a specialized program may require a driver, a bus aide, one-on-one support from a paraprofessional or even a “classroom of one” with a dedicated teacher.

When IDEA initially passed, Congress set a goal of paying for 40 percent of the cost of special ed, but only once in the ensuing four decades have reimbursement levels topped 20 percent. State governments pay lip service to making up the shortfall, but the reality is that in a majority of states, per pupil funding still hasn’t caught up to pre-recession levels. Exacerbating the shortfalls, overall local funding actually declined between 2008 and 2014.

And so an average of 20 percent of a district’s per pupil funding goes to pay for unreimbursed special ed costs. And in states like my home, Minnesota, where increasing education funding is politically palatable, closing this gap will never make elected officials’ to-do list. What lawmaker wouldn’t prefer the sleight of hand of being able to say they found more money for their constituents’ schools?

The reality is that most special ed families are like mine, swallowing the discomfort of being made to feel like we are asking for “extras.” And hyper-vigilant lest our student’s next-best advocates default to offering the most convenient supports, versus the occupational therapy that might make school a community and not a gauntlet to be survived.

In the story we tell ourselves about our values as a country, creating a zero-sum funding game and then pointing at the most vulnerable kids isn’t how we do public education. Paying for special education isn’t swamping the system. Backing away from our collective belief that educating every single child is the basis for a strong and vibrant democracy is.

Beth Hawkins is the writer-in-residence at Education Post. Her work appears in The74Million.org, US News & World Report and other outlets.

The Hechinger Report provides in-depth, fact-based, unbiased reporting on education that is free to all readers. But that doesn't mean it's free to produce. Our work keeps educators and the public informed about pressing issues at schools and on campuses throughout the country. We tell the whole story, even when the details are inconvenient. Help us keep doing that.

Join us today.

Letters to the Editor

At The Hechinger Report, we publish thoughtful letters from readers that contribute to the ongoing discussion about the education topics we cover. Please read our guidelines for more information. We will not consider letters that do not contain a full name and valid email address. You may submit news tips or ideas here without a full name, but not letters.

By submitting your name, you grant us permission to publish it with your letter. We will never publish your email address. You must fill out all fields to submit a letter.

Your email address will not be published. Required fields are marked *