"Andrea Rediske's 11-year-old son Ethan, is dying. Last year, Ethan, who was born with brain damage, has cerebral palsy and is blind, was forced to take a version of the Florida Comprehensive Assessment Test.... Now his mom has to prove that Ethan, now in a morphine coma, is in no condition to take another test this year." This is the lead in a blog entry from yesterday by the Washington Post's Valerie Strauss.
The federal special education law known today as IDEA was enacted in 1975 to remedy the abuses of special needs children locked up in cruel institutions like Willowbrook. But laws tend to take a life of their own, and the broad legal mandate for special education--requiring "free appropriate public education" in the "least restrictive environment"--leaves little room for judgment or balance.
Over the past 40 years, special education has become a bureaucratic jungle--where everyone is so tangled in legal vines, and scared of legal claims, that there is no room to do what's right. Last year in Florida a 9-year-old boy who is blind and born with only a brain stem was forced to submit to a test where instructors asked him to identify pictures. As a school board member commented: "He's blind. And they're showing him pictures of a giraffe, a monkey and an elephant--and asking him which one is the monkey.... I'm watching all this and just about to lose my mind."
The absurdist quality of testing children in a coma or born without a brain exposes a regulatory system that has lost the oxygen of common sense. All kinds of bad choices emerge from the self-contained bureaucracy. Some principals say they spend as much as half their time dealing with special ed legal demands. The learning of other students is compromised when uncontrollable, sometimes violent, children, based on their parents' legal demands, are mainstreamed. Wealthy parents have the legal right to demand school districts pay for private schooling--sometimes at a cost that exceeds $100,000 per year.
How much does all these special ed entitlements and bureaucracy cost? Special ed now consumes over 25 percent of the total K-12 budget in America, for a tiny proportion of students who actually need it. Meanwhile, there's almost nothing in programs for gifted students -- less than 1 percent. Nor is there any material budget for pre-K education, which is why New York Mayor de Blasio campaigned for new taxes on the wealthy -- which would almost certainly drive some taxpayers out of the jurisdiction. Who made the decision that this special ed spending is the right balance of school budgets? No one. No one is even asking the question.
Gosh, say defenders of the status quo, we wouldn't want to go back to the bad old days. But our choice isn't between cruel neglect and bureaucratic excess. The goal is always balance. As I described in my last book (Life Without Lawyers), countries such as Denmark provide robust special education services in the context of balancing the needs of all students. The difference there is that officials have the responsibility to use their judgment in each situation, not follow mindless mandates.
America's special ed system is not just unwise, or inefficient, or absurdist. It is immoral. It is immoral not in its broad goals, but in its implementation. It is immoral to give disabled students a Rolls-Royce budget and give all other students what's left over. It is immoral to treat grieving parents as bureaucratic boxes on a checklist.
In a recent email seeking relief for her dying son from Florida's assessment requirements, Andrea Rediske wrote:
"Every day that [the special ed teacher] comes to visit, she is required to do paperwork to document his 'progress.' Seriously? Why is Ethan Rediske not meeting his 6th-grade hospital homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. ... This madness has got to stop."
The IDEA is expected to be reauthorized as soon as next year. It's not hard to figure out why there's no political champion for overhaul. Who wants to incur the wrath of special ed parents who, understandably, want everything possible for their children? But this madness has to stop.