You’d think that being severely brain damaged, blind and bound to a wheelchair in 2013 would have been enough of a clue that Ethan Rediske was not able to take a required standardized test in 2014. Or the fact that he was in hospice care, dying.
Yet parents Andrea and Chris Rediske of Orange County were required by the state of Florida to repeatedly write letters to state education officials explaining why their severely disabled son was in no condition to take a mandated standardized test. Ethan died last month at age 11 at home, with his parents by his side.
I’ve been writing repeatedly about this family and their story for the past several weeks because I keep learning new things about what they’ve been going through.
The Rediskes fought a years-long battle with the Florida Education Department over the requirement that their son — like all children attending public schools or being taught by public school teachers in alternative settings, no matter how severely disabled — take a standardized test. Ethan was born severely brain-damaged, and he had cerebral palsy that left him confined to a wheelchair for a big part of his life. He was blind as well.
Yet over and over, they had to put in letters the details about Ethan’s condition. One letter wasn’t enough. Ethan took several annual tests before being granted a waiver in 2013. But his family was asked to go through the process all over again in 2014 — even while he was dying — because the 2013 waiver was only for a single year. And the process to get the 2013 waiver was long and difficult, ultimately requiring the commissioner of education in the state to approve the request.
The Rediskes are not the only families who have gone through such an ordeal. There are too many families in Florida and across the country who have severely disabled students who are required by federal and state law to take some form of a standardized test, even if they are incapable of even understanding the questions. The obsession with standardized testing has gotten to a point in this country where common sense no longer prevails in questions like this.
There is now a bill called the Ethan Rediske Act that has been introduced in the Florida legislature that would make it easier for families with severely disabled children to obtain waivers from standardized testing. Sounds like a no-brainer, right? Except it is not clear whether the bill will even come up for consideration. We’ll see.
Here’s the January 2013 letter she wrote that persuaded the state to give Ethan a waiver from the 2013 Florida Alternative Assessment. Read it and ask yourself why she had to go through the exercise of filling out forms in 2014 to obtain another waiver.
To Whom It May Concern:
I am writing this letter on behalf of my son Ethan Rediske to request a waiver from the Florida Alternate Assessment for health reasons.
Ethan was born on 05 May 2002 and suffered a hypoxic brain injury at birth due to eclampsia during labor at full term. He was resuscitated after a caesarian delivery and was in the NICU for 3 weeks due to the traumatic birth. His apgar scores were 1 and 2 after birth. Due to this event, Ethan suffers from intractable seizures, cerebral palsy involving global damage to his cerebral cortex, cortical blindness, and severe developmental delay. He is fed via g-tube, does not speak, and makes no purposeful movement. At 10 years old, his estimated developmental level is 6 months of age. He is wheelchair, bed, and housebound. Additionally, due to the nature of his physical disabilities, he suffers from atelectasis, or partial collapse of the lower lobe of his left lung, which makes him particularly susceptible to respiratory infections. He requires nursing care for 12 hours a day in the home. Because of his extreme medical fragility, he is enrolled in the Hospital/Homebound program with Orange County Public Schools.
Through intensive physical, occupational, and speech therapy along with the meticulous efforts of his Hospital/Homebound teachers for the past 7 years, Ethan has achieved very limited and rudimentary communication skills. He has a very slight thumb lift with his left hand to indicate “yes” or “no,” and he has an inconsistent eye gaze. He does respond to light, music, and certain colors. He has sessions with his OCPS Hospital/Homebound teacher 2 – 3 times a week, which are, for the most part, enjoyable experiences for him. Ethan is able to improve on his rudimentary communication skills, and his quality of life is greatly improved through the interaction with his teacher, the opportunity to participate in hands-on learning activities, as well as listening to songs and stories with her.
Ethan has been required to take the Florida Alternate Assessment for the past two years, and in addition to the questions being entirely inappropriate for his level of cognition (he cannot comprehend questions about math, staplers, clocks, shoes, or even food), there is no way to accurately assess his understanding of the material being presented given his limited communication skills. Additionally, the testing procedure is extremely physically taxing for him, requiring him to sit in his wheelchair for long periods of time and focus on black-and-white pictures, which are difficult for him to perceive at best. Because both his thumb-lift and eye gaze are inconsistent mechanisms of communication, it is impossible to accurately perceive which picture he may or may not be looking at or responding to in order to answer the questions put before him. The FAA is in no way an accurate measure of Ethan’s scholastic achievement.
After the testing sessions, he is physically exhausted and often develops pressure sores from sitting in his wheelchair for extended periods of time. He also has developed respiratory infections from fluid pooling in his lungs from the long testing sessions in the wheelchair. Despite the best efforts of his Hospital/Homebound teacher and his in-home nurse, the testing materials and procedures are not only ineffective assessments of his abilities; they are detrimental to his health.
It is for these reasons that I respectfully request that Ethan be waived from the requirement for taking the FAA. I cannot allow my son to be subjected to a test that is not only an ineffective measurement of his scholastic achievements but puts his health at risk. Ethan has had three major hospitalizations in the Pediatric Critical Care and Intensive Care units at Florida Hospital this calendar year for respiratory infections and bowel obstructions and I am extremely concerned that taking the FAA will further endanger his health.
Thank you for your time and consideration of my request.
She won the 2013 waiver after filling out a lot of paperwork, but had to go through the process again in 2014. Andrea Rediske said she told officials that her son was dying and in hospice care but she was required to prove it. Here’s the 2014 letter from the firm providing hospice services to Ethan addressed to Jennifer Rose, Ethan’s special education teacher who was asked by the state to fill out forms proving that Ethan could not take the Florida Alternative Assessment.