Just when you think this story can’t get any more awful, it does. Andrea Rediske’s effort to help families of children with severe disabilities has taken yet another frustrating turn.

I’ve written several posts about Rediske’s long struggle with the Florida Department of Education over a requirement that her blind and severely brain-damaged son, Ethan, take state-mandated standardized tests. Rediske won a waiver for her son in 2013, but earlier this year she was told she had to apply for another one or prove that he wasn’t able to do so. At the time, Ethan was dying in a hospital; he passed away Feb. 7, at home with his parents at his side.

Though her son had died, Andrea Rediske, a college professor, decided to try to help other families in the same situation she had been. She wrote in an e-mail:

If we can make a difference for one child like Ethan, and if one mother doesn’t sprout a few extra gray hairs because of this fight, it will be worth it.

She advocated for legislation in Florida for waivers to be given to students with severe disabilities — and was attacked by Education Commissioner Pam Stewart, who called advocates for testing changes of launching a political attack on the department. Stewart declined to answer questions about why she sent the letter.

One Florida lawmaker submitted a bill titled the “Ethan Rediske Act” that would have made it far easier for a very small percentage of families to obtain waivers from the tests — but the bill was never even sent to a committee. Some of the language was inserted into a different education accountability bill, but it doesn’t do much to help the situation. In fact, it leaves it as muddled as ever for families seeking waivers. A letter to Andrea Rediske from Dominique Gelin, an aide in Rep. Castor Dentel’s Tallahassee office, said in part:

To me, it doesn’t make the process any easier and makes it unclear when someone needs to apply for a one-year, one-three year or permanent exemption. I don’t understand why this process gets more complicated with each step, especially when the whole purpose is to simplify and remove an unnecessary bureaucratic burden on families.

Then another party weighed in. According to this story in the Tampa Bay Times, Cheryl Sattler,  president of FedNet, an organization of Florida’s federal education program officials, sent a letter to state lawmakers warning them that some of the proposed changes to Florida’s school accountability system — including the waiver language — “could put the state at risk of losing its federal No Child Left Behind waiver.” (The federal government has awarded states waivers from the most onerous aspects of NCLB, but in exchange states had to promise to implement specific reforms and measures.)

Her letter says in part:

…Further, CS/HB 7117/SB 1642 would exempt numerous students with disabilities from state testing. Federal law requires that at least 99 percent of students with disabilities must be included in the State’s accountability system. This exemption appears to violate Federal law.

I asked the Education Department for a comment about this but after several days did not receive an answer. 
Rediske decided to write Michael Yudin, assistant secretary for the U.S. Office of Special Education and Rehabilitative Services, and here is her letter to him:

Dear Michael Yudin,
I am writing to you to request that the requirements for standardized testing of severely disabled and medically fragile children as required by the No Child Left Behind Act be waived.
My son Ethan suffered a brain injury at birth, which left him with cerebral palsy, epilepsy, cortical blindness, developmental delay, lung and gut compromise, and a host of other medical problems.  He could not speak or make any purposeful movements, and at 11 years old, had the cognitive ability of a 6-month-old.
Like every other child in the United States, Ethan was entitled to a free and appropriate public education, and he received an excellent education through the Hospital/Homebound Program at Orange County Public Schools in Orlando Florida.  I am his mother, I have a Master’s degree in microbiology, and 11 years of experience as a college professor, but I lacked the skills needed to educate him appropriately in a homeschool environment.
Ethan’s incredibly talented special education teacher worked with him for many years and was highly attuned to his particular needs and abilities.  One day she told me that she noticed that Ethan raised his left thumb ever so slightly when something happened that he liked.  I didn’t notice this – it took the insight and skill of a special education teacher to make the connection.  For a child who made inconsistent responses to stimulus, this was a quantum leap.  For the first time in his life, Ethan was able to communicate.  “Do you want more music, Ethan?”  Thumb lift.  “Do you want more story, Ethan?”  Thumb lift.  “Do you want more bubbles, Ethan?”  No movement.  Ethan was able to indicate “yes” and “no.”  We rejoiced and wept over this tiny thumb lift.  “Thumbs up for music, Ethan!”  “Thumbs up for more, Ethan!”  From that point on, Ethan’s teacher searched for ways for Ethan to communicate through switches, touch cards, and programs for the cortically blind.  She opened up his world and helped this child who seemingly had no voice to communicate his desires to his family, teachers, and therapists.
For the past four years, Ethan was required to take the Florida Alternate Assessment (FAA), a standardized test required by the Florida Department of Education and the No Child Left Behind Act.  As a mother and an educator, I can attest that the FAA was in no way appropriate for Ethan’s level of ability.  He was asked questions about shoes, alarm clocks, and staplers – items that he had never used and never would use.  He was shown a picture of a dollar and asked which of the pictures below it were equivalent to a dollar. He was shown a picture of a rectangle and asked which of the pictures below it would equal one half of that shape.  Ethan was cortically blind, and could not even see the shapes or pictures, much less interpret what they meant.  Even more insultingly, he was asked questions about eating food, running, and playing – things he would never do.
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 for the 2012-2013 school year.  Despite assurances at his IEP meeting that the waiver would be granted again for the 2013-2014 school year, the school district demanded paperwork in early February proving his continued medical fragility and inability to take the FAA.
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.  You may be wondering why I’m referring to my son in the past tense.  Ethan passed away on February 7th, 2014.
I am writing to you to appeal the requirements of the No Child Left Behind act that require severely disabled and medically fragile children to be subjected to standardized testing.  There are thousands of other children like Ethan in this country who are required to take tests that are inappropriate for their level of ability, and thousands of other parents like me who can see how these tests are damaging to their children.
Each of these children, like Ethan, has an Individual Education Plan that sets goals and benchmarks appropriate to the level of these students’ abilities.  I don’t disagree that there should be assessment and accountability when it comes to educating special needs children, but these assessments need to be appropriate.  State- and federally-mandated standardized tests, even those adapted to the disabled, completely run counter to an individual education plan and ignore other tenets of the Individuals with Disabilities Education Act, including parent and student participation and shared decision making.  As Ethan’s mother, I had no say in whether the FAA was appropriate or necessary for him, and indeed, I have been attacked by the Florida Commissioner of Education for requesting a waiver for this inappropriate test and speaking out against it.
I implore you to consider the needs of the severely disabled and medically fragile children of this country.  Please allow the requirements for standardized testing to be waived and allow these children to be appropriately assessed according to their IEPs.
Thank you,
Andrea Rediske

Stay tuned.