Ethan's Act Update

UPDATE: This story has taken an ugly political turn, and the note of hope that I struck here was severely pre-mature. Please read this update to the update.

Andrea Pratt Rediske is disappointed and frustrated, but as I'm "talking" to her on facebook this morning before school, she has finally received word about the current fate of the Florida bill that carries her son's name.

You will recognize Andrea Rediske as the mother of Ethan Rediske, who made news as the victim of Florida's bizarrely Kafka-esque testing rules. Ethan was born with cerebral palsy, brain damage, and blindness. Taking the FCAT was both hugely, insanely useless given the level of his cognitive capabilities, but worse than that, the challenge of taking the test was literally physical torture for him. And yet Florida required an annual pile of fresh paperwork to issue Ethan a waiver from the test.

This last year, the state required a note from Ethan's hospice to prove that the child was, in fact, dying.

Andrea Rediske is not a wimp. She is a professor of microbiology, and about the challenges of raising a child with extraordinary needs she once wrote

"My faith teaches me that motherhood is a sacred responsibility, and I am the mother of a severely disabled 10-year-old who has the cognitive ability of a 6-month-old. My son is ‘invisible’ to society—he is too medically fragile to attend school, church, or even go to the grocery store. He has no voice except mine, and I continually battle profit-driven insurance companies to meet his medical needs."

I can only imagine the stress and strain of caring for a comatose, dying child while fending off the state bureaucracy that demands documentation of the weight your family is carrying. But Rediske had the additional strength to bring her son's case before the world as an example of just how badly out of whack the testing culture has become. And her struggles weren't done.

Ethan passed away in February. Rediske continued the fight to protect students with extraordinary needs from the testing juggernaut. FL Commissioner of Education Pam Stewart issued a stunningly tone deaf letter to all teachers that seemed to suggest that taking the FCAT is a wonderful privilege of which special needs students must not be deprived.

Examples of test abuse piled up (how about making a blind student answer picture-based items). State Rep. Karen Castor Dentel, D-Maitland, filed a bill to streamline the process of exempting students with extraordinary needs from testing. She named the bill House Bill 895 "The Ethan Rediske Act."

That was almost a month ago. And then, as the wheels of politics do, the wheels stopped. Rediske could not get word back from the state capitol. She could not find out what was happening with Ethan's bill.

As of this morning, March 26, she knows. The Ethan Rediske Act has been folded into FL HB 7117, a larger bill about school accountability. The bill is 47 pages long, but back on page 38 she found this language:

9) CHILD WITH MEDICAL COMPLEXITY.

(a) As used in this subsection, the term "child with medical complexity" means a child who is medically fragile and needs intensive care due to a condition such as a congenital or acquired multisystem disease or who has a severe neurologic condition with marked functional impairment.

(b) Effective July 1, 2014, a student may not participate in statewide, standardized assessments, including taking the Florida Alternate Assessment, if the student's IEP team, with parental consent, determines that it is inappropriate for the student to participate. The IEP team's determination must be based upon compelling medical documentation froma physician licensed under chapter 458 stating that the student is a child with medical complexity and lacks the capacity to take or perform on an assessment. The district school superintendent must review and approve the IEP team's recommendation. 

(c) The district school superintendent shall report annually to the district school board and the Department of Education the number of students who are identified as a child with medical complexity who are not participating in the assessment program

So the news this morning is that Ethan's Act is still alive after a fashion. Protection for children like him is now included in a larger bill, tucked away in the back pages just as students like Ethan used to be tucked away in a back room. But if HB 7117 finally becomes law, the intent of Ethan's Act will become law with it, if not the name.

Meanwhile, it does not appear that Andrea Rediske is learning to love politics. One wonders why it is necessary to work the machinery and feed the agendas and manage the process when it seems so simple to just look at the way standardized tests become devices of torture for special needs students, simple to look at that and say, "Holy smokes! That is messed up! Let's fix that right now."

I know nobody wants to see the political sausages made, but it's nice to imagine that our politicians can see the right thing to do, and then just do it. Thanks goodness we have parents with the kind of strength and devotion displayed by Andrea Rediske. She may not have the comfort of seeing her son's name take its place on an important Florida law, but she can at least see that reaction to his story is on its way to ending a troubling injustice.