TALLAHASSEE — While her 11-year-old son Ethan lay dying last month, Andrea Rediske had to convince the boy's school district he could not take the state tests.
Ethan's teacher made daily visits to assess his progress — even when he was in hospice care.
"Seriously?" Rediske wrote in a Feb. 4 email to Orange County School Board member Rich Roach. "Why is Ethan Rediske not meeting his sixth-grade hospital-homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day."
The boy died three days later.
As state education officials work to overhaul the education accountability system, the plight of severely disabled students like Ethan and their teachers is gathering increasing attention in the halls of the Florida Capitol.
On Wednesday, the state teachers union released a video showing Polk County teachers giving standardized tests to four students with severe disabilities.
Separately, Pasco County teacher Sabrina Berger raised concerns about testing special-needs students in a letter to superintendent Kurt Browning. Her words captured the attention of Republican House Speaker Will Weatherford.
"We need to do something about this for sure," Weatherford wrote in an email to Browning last week.
Florida lawmakers are poised to take action.
Earlier this month, Rep. Karen Castor Dentel, D-Maitland, filed a bill that would make it easier for students with disabilities to receive testing waivers.
Weatherford said he is willing to consider it.
"Ethan Rediske's heart wrenching story highlighted that our requirements for assessments can be uncompromising in the most extreme cases," he said in a statement. "I appreciate the proposals presented to address the problem and I look forward to seeing them get a fair hearing this session."
Weatherford also may be open to tweaking the teacher evaluation formula to provide some leeway to special-education teachers, he said in the letter to Browning.
All students in Florida public schools are required to participate in state assessments.
The Education Department is in the process of selecting new tests. For now, most children take the Florida Comprehensive Assessment Tests (FCAT) and the state end-of-course exams. Special-needs students can take an alternate assessment, and those with extreme disabilities can apply for an exemption. But the request must be approved by the superintendent and the state education commissioner.
About 1.7 million Florida students take the annual statewide assessment. The Education Department received a total of 30 requests for exemptions from this year's assessments, a department spokesman said. Sixteen have been approved.
Ethan Rediske's mother said he got a waiver only after she reached out to the media.
The video released by the Florida Education Association on Wednesday featured four special-needs students from Polk County who had to take the state tests.
Among them: 11-year-old Luis Medina, who is blind and in a persistent vegetative state.
In the video, a teacher shows Luis a series of drawings and asks him to answer questions. The boy, who has suffered brain damage, cannot understand or communicate.
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Explore all your options"Right now, how they are testing my child is not the right way," said his mother, Maria Rivera.
State Education Commissioner Pam Stewart defended the use of assessments for all students.
"We all know that the only way to guarantee success in any endeavor is to set goals and measure our progress," Stewart said. "Measuring progress is key to successful learning, and I firmly believe that every child enrolled in a public school in Florida deserves the opportunity to have access to the best education possible. It would be a moral outrage to deny that opportunity to any child for any reason."
But teachers and school administrators have concerns about the practice.
Berger, the Pasco teacher, has taught profoundly disabled students for 18 years. She spent Wednesday testing a child who had to be given a cookie after each answer to help keep him focused.
"They're telling us to do things against what we've always done, what I know is right," she said.
Berger also is concerned about the effect on her performance evaluation, which will be based partly on her students' test scores and could factor into her pay.
State education officials say the new formula for calculating teacher performance accounts for external factors, including whether a student has special needs. But, like other teachers, Berger questioned that premise.
"How can their brain damage and multiple challenges be ignored as barriers to achievement?" she wrote. "My students do make achievements, but not on things being evaluated by tests."
Kathleen McGrory can be reached at kmcgrory@miamiherald.com and Jeffrey S. Solochek can be reached at jsolochek@tampabay.com.