My friend Andrea Rediske's oldest son, Ethan, was injured at birth. He developed cerebral palsy, brain damage, and blindness. He was also really sweet, and loved by his brothers, his teacher, and his dog. Ethan was in hospice for a month before passing away a few short weeks ago, but even while on his death bed Florida still wanted him to take a test to make sure he was meeting the standards of a sixth-grade education.
The Rediskes live in Florida, where there's a no-matter-what policy regarding the state standardized school test, the Florida Comprehensive Assessment (FCA). Ethan did not attend a regular classroom, his teacher came to him a couple hours a week, but the FCA requires that even when kids like Ethan are hospitalized or placed in hospice care, teachers must "test" them regularly to ensure they're meeting the state standards for education. Special education teachers aren't exempt from testing their students, regardless of condition, and must demonstrate progress for the child, or they may not be paid, may never get a raise, and if their students don't improve over time, they could be fired.
Parents who want their special needs children to learn and progress must have their children tested or risk losing the teacher's visits altogether, as well as any special education assistance from the state. It makes zero sense to force a kid like Ethan into six hours of testing over two weeks, but that's exactly what happened.
Last year Andrea and other mothers of severely affected special needs students joined forces to have their children exempted from the test. A question about peaches, when Ethan ate through a tube, is what drove Andrea over the edge. "He didn't know what a peach tastes like," she said, "He never knew what a peach tastes like. Or an apple. Or bananas. It was completely irrelevant to his life."
Andrea fought this battle for three years, forced to go through the hell of paperwork and phone calls to get a new exemption every year. But it was even worse this year once it became clear that Ethan was nearing the last days of his life.
I'm a supporter of standardized testing; I think they are often an effective way to measure students and their progress in a classroom. However, subjecting children with such profound disabilities and lifelong chronic conditions to these tests is beyond ridiculous; it defies logic, and more importantly, common sense and decency.
Instead of spending their last days with Ethan by his side, stroking his hair, holding his hand, and reading to him, Andrea had to shuffle paperwork, request waivers, and make phone calls to get an exemption from the state. Why isn't there a permanent exemption for children like Ethan? The child was in a morphine coma, but Florida still demanded to know why he was not meeting a sixth-grade curriculum, and required his teacher to document his "progress" every day.
Now that Ethan has passed, Andrea is reaching out again to all the moms out there, starting with this statement:
"There have been whisperings that part of the reason why the state of Florida was recalcitrant to give Ethan and other children like him a waiver from standardized testing is because the federal government withholds money for each student granted a waiver. This suggests that the problem of disabled children being forced to take standardized tests is not just an issue in our state and district, it goes all the way to the federal level. We have to fight this with a grassroots effort. No family should have to go through what we have gone through. Help us carry on Ethan's legacy by writing to your school district, your state legislators, and your congressional representatives to change these laws and policies, which abuse the most helpless under their stewardship."
There's a bill in front of the Florida legislature now that would establish eligibility criteria for the assessment of students with disabilities and review the way the state processes waivers. It's called Ethan's Act. You can help by writing your representatives asking they exam testing laws to make sure the truly disabled aren't unduly stressed by bureaucratic policies at the expense of human decency.
Our thoughts and prayers go out to Andrea, the Rediske family, and all the heroes fighting for their children.