( Ethan Rediske (Used with permission)

Earlier this month I wrote about Andrea Rediske, who had fought a long battle with the Florida Department of Education over a requirement that her blind and brain-damaged son, Ethan, who also suffered from cerebral palsy, take state-mandated standardized tests. Rediske managed to win a waiver for her son, but recently, while he lay dying in a hospital, she was required to fill out paperwork proving that Ethan could not take a new standardized test this year. Ethan passed away on Feb. 7, at home with his parents at his side.

On Tuesday, Andrea Rediske appeared before the Florida Board of Education (more than four hours after she was told she could speak). Here is her powerful speech (which you can watch below), urging lawmakers to approve proposed legislation called the Ethan Rediske Act, which would allow local authorities to exempt disabled students from taking high-stakes standardized tests rather than continuing the current lengthy process that involves state officials.

My name is Andrea Rediske, and I am Ethan Rediske’s mother. Before you peg me as merely an angry and grieving mother, let me tell you a little bit about myself: I am an educator. I have a master’s degree in microbiology and have been an adjunct professor of microbiology for 11 years. I have a passion for education and I know how to write an exam that accurately assesses the abilities of my students.

Not only was the Florida Adapted Assessment inappropriate for the level of my son’s abilities, it endangered his health – the long, stressful testing sessions requiring him to sit in his wheelchair caused pressure sores, fluid to pool in his lungs, and increased seizures and spasticity that contributed to his deteriorating health.

Only after climbing a mountain of paperwork and garnering media attention was Ethan granted a medical waiver for the FAA. Despite assurances at his IEP meeting that the waiver would be granted again for this school year, the school district demanded paperwork proving his continued medical fragility. The insult to this injury was that he was on his deathbed – the school district and the state of Florida required a letter from hospice care stating he was unable to take the FAA.

This incident caused anguish to my family and his teacher, and shows a stunning lack of compassion and even common sense on the part of the Department of Education. His exceptionally talented teacher faced threats and sanctions because she continued to work with him even though he wasn’t preparing for the FAA. I wonder if these administrators are more concerned with policy, paperwork, and their bottom line than the children they have been elected to serve.

You may ask yourselves, if this is such a problem, why isn’t there more public outcry from the parents of disabled children? I am here to tell you why: Parents of disabled children are exhausted. We spend our lives simply keeping these children alive. We juggle doctor’s appointments, therapies, medications, and continually battle the insurance company to secure their medical needs. At the end of the day, we don’t have the strength to climb the mountain of paperwork to exempt our children from these inappropriate tests.

To the Department of Education: I hope a better understanding of how these tests were damaging to my family and to other families like ours will help you make better policy decisions in the future. Please don’t force any other family to suffer as ours has. I call on the legislature of the State of Florida to not only pass the Ethan Rediske Act, which would exempt disabled children from the rigors of high-stakes standardized testing, but I implore the legislature to go further and to enact legislation that allows any student who experiences pain and suffering as the result of high-stakes standardized testing to opt out of these tests.

Thank you.

(Update: changing headline to say “kids with severe disabilities” sted  “severely disabled kids”)