This is a horrifying story about educational policy gone mad, gone cruel, gone inhumane.
Ethan Rediske, an 11-year-old boy, died in hospice in Florida last Friday.
Before he died, his plight gained national attention.
Valerie Strauss wrote about him, and so did Laura Clawson in the Daily Kos.
Ethan was blind and had brain damage and cerebral palsy.
As he lay dying in hospice, the state demanded written documentation to prove that he should not be required to take the FCAT (Florida Comprehensive Assessment Test).
Surely, the state knew his condition. But the state could not rest content. They needed proof before allowing this child to skip the state test.
He had a teacher who came to his room each day, but he obviously could not take the FCAT.
His mother publicized this absurd, heartless, and cruel situation.
Without documentation, Ethan’s teacher will be penalized because he didn’t take the test.
A few days ago, Ethan’s mother wrote:
Ethan is dying. He has been in hospice care for the past month. We are in the last days of his life. His loving and dedicated teacher, Jennifer Rose has been visiting him every day, bringing some love, peace, and light into these last days. How do we know that he knows that she is there? Because he opens his eyes and gives her a little smile. He is content and comforted after she leaves.
Jennifer is the greatest example of what a dedicated teacher should be. About a week ago, Jennifer hesitantly told me that the district required a medical update for continuation of the med waiver for the adapted FCAT. Apparently, my communication through her that he was in hospice wasn’t enough: they required a letter from the hospice company to say that he was dying. Every day that she comes to visit, she is required to do paperwork to document his “progress.” Seriously? Why is Ethan Rediske not meeting his 6th-grade hospital homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day. He is tenaciously clinging to life.
Secretary of Education Arne Duncan, how will you evaluate the performance of Ethan’s teacher Jennifer Rose? Will she be considered “ineffective” because Ethan didn’t make any progress this year?
Jeb Bush, is this the accountability system of which you are so proud? Is this the Florida model?
Arne and Jeb, this is not a multiple-choice question: Do you care more about children or about data? Please write a five-paragraph essay with specific reference to the case of Ethan.
Diane Ravitch's blog 
Bless beautiful Ethan and his amazing family. I would love to hear more about what Ethan could do during his rich life than what he couldn’t. What a privilege and an honor it must have been for his special education team to work with him every day. Who in their right mind would required a teacher to present this scenario to a family in this situation. Have they no shame?
LikeLike
No, they don’t. The rigor (rigidity) of their thinking imprisons them from reaching any remaining compassion in their hearts.
LikeLike
The only way forward is a sincere apology.
These mindless bureaucrats have tainted our profession beyond measure.
LikeLike
A sincere apology and a COMPLETE repudiation in these asinine policies that treat all children, and particularly those precious children with special needs, as “assets” instead of human beings.
LikeLike
Years ago I stumbled upon a book called The American Reader. It contained “words that moved a nation” (speeches, poems).
I gifted it to a young Social Studies teacher. In the book were Welch’s famous words: “have you no sense of decency sir…..”
LikeLike
Thanks to Orlando Sentinel columnist Scott Maxwell for bringing this story to light. Florida must stop the misuse and overuse of testing.
LikeLike
Enough is ENOUGH! Florida, it’s time to storm the castle. Let’s make this story go viral.
My heart goes out to Ethan’s family and to Jennifer Rose for the loss of this brave little boy.
LikeLike
Agree….Will they wake-up?
What has happened to these people??
This is so heartless…and all because of a Test Score. This is out of control…
Ethan is being treated like data for a report even at the end of his precious short life..
LikeLike
About twenty years ago I had a similar situation. My student was mentally disabled and in the last stages of muscular dystrophy. I asked if there was some kind of waiver so he could be spared from the ordeal of testing. No! Every student must be tested. He died before we got the results back. He is on longer with us, but we have the data.
LikeLike
Very simple! This child should have had a 504 plan which specifically defines his accommodations, modifications, exclusions, and exemptions base on his physical condition due to his medical situation. )All student are eligible for the same services and considerations classified or not.
LikeLike
Gregory,
Once a child is eligible for SpEd services and has an IEP, he is. to eligible for Section 504. IEP should cover those needs. However, Arne & Co. have weakened and mandated parts of every documents, either legally or by bullying and intimidating parents and teachers.
Even dying does not qualify you for humanistic treatment.
Soon, Arne & Jeb will require a Death Certificate from parents.
Yes, they have no decency! I will not finish that quote with ‘sir’. It does not suit them.
Condolences to the parents and his loving teacher.
I dare Arne,Jeb and Ms. Rose’s administrators to come after her.
TRIPPLE DOUBLE DARE them! There are millions of voices out here who do represent decency.
LikeLike
Gregory, Florida is working on that! The state legislature passed a new ALEC-written law last year that now requires all teachers to complete classes in special education in order to renew their licenses. We, of course, already have special education training in our certification classes but that no longer counts. The state will profit by offering these required classes online, either by charing fees or letting their political supporters charge fees and then receiving kickbacks in the form of political donations. Pearson all but runs Tallahassee now.
We are being told that they are ending standalone special education classes because far too many students have been improperly placed. They cloak it in the language of racism (see Deborah Meier post above) but the real reason is that they want to stop spending more money on these children and their teachers/service providers.
In the last decade it has become all but impossible to refer a student and have them evaluated and labelled eligible for special education services. I have worked for 4 and 5 years on students that I had in first grade. We go through endless data collection, RTI intervention after RTI intervention, evaluation after evaluation, and there is always something that wasn’t done to specification and so the process must be started over or extended indefinitely.
The master plan is to keep all special education students in regular classrooms without providing any additional help or funding and place the onus on the classroom teacher to maintain that student at grade level performance. It’s a win-win for the state — another way to get teachers and destroy their careers, another way to increase profits for the eduvultures that permeate our state system.
The children suffer. The children always suffer. And yet the parents of this state continue to vote the hoodlums into office and sit back while they pass ALEC law after ALEC law that harms their own children because liberals are “evil”.
May Ethan rest in peace. May his family, friends, and teacher find comfort in their memories of him.
And may the Florida Department of Education, JEB! Bush (who rumor has it will be running for president), and Arne Duncan be brought to justice by the American people for their egregious wrongs against children like Ethan and the evil they continue to spread across this country.
LikeLike
No they did not care …It is all about the money and making each other people rich.What do the teachers know ?? The higher powers definitely
know better…NOT…… I am getting ready to retire, Maybe sooner than later. 😦
LikeLike
Ethan’s legacy will be that he fought because his parents and his teacher CARED about him as a PERSON not a number. They were aware of his infinite potential as a human being not as a data point.
I am blessed to teach because I make a difference in the lives of people not numbers. One day politicians will remember that that was their charge as well. Wake up world! We need to fight the money, the system and the politics. It is time for the majority to take things back from minority rule! The lives of our children and families depend on us to take charge.
LikeLike
Secretary Duncan, please resign.
President Obama, when campaigning, you promised us Linda Darling Hammond. Please end your “bait and switch” and keep your word.
Mrs. Obama, is this what you want to see as your husband’s legacy. Does your husband have any idea of what harm Arne Duncan is doing to children with high stakes resting?
I am not a K-12 teacher, I am a parent.
LikeLike
Arne Duncan is doing precisely what Barry wants him to do. Barry O. is a tool, not a fool.
LikeLike
Ryan White, just entering middle school, fought bravely for fair treatment of everyone who had AIDS That was before he died of AIDS. His mother fought equally hard to get the Ryan White Bill passed.
Tragic as it, Ethan Rediske and his mom and loving teacher, plus everyone engaged in social media may have the break through this horrible era draconian and mindless policies, extending to a demand for testing students while they are dying.
Brave student, mother, and teacher.
Suggestion: Open the Austin conference with a moment of silence and a blast of communications to President and Michelle Obama, Arne, Jeb, Bill Gates and anyone else on your list of supporters of this madness.
LikeLike
my sister had only 3 months to live; she had a two hour interview that qualified her for hospice in California; her son drove her to his house in Seattle and they wanted her to do the 2 hour interview over again; at that point she had strength that would last 15 minutes at a time and her words did not have enough breath behind them to reach us; I stood and put my ear to her voice to hear her ask for “drink”…. I don’t know why they wanted her to repeat a two hour interview when she was dying and had no strength…. Could it be they were afraid of people committing fraud? At any rate, the family decided to arrange for paid care workers to assist ; hospice provided medicine and oxygen tank and a worker who came once a week for the bath…. the family hired workers. This may not be at all the same but I am wondering why these policies are in place? Do you think it is to prevent some kind of fraud? To put a person through this kind of torture to qualify for a worker to come to the home for hospice care? I would like to know; it is California and Seattle; does this occur in other states?
LikeLike
Compassion and mercy aren’t in short supply among the self-styled “education reformers.” It’s just that they save all those tender feelings for THEIR OWN CHILDREN and for the schools THEIR OWN CHILDREN attend.
I refer all viewers of this blog to a recent post by Jersey Jazzman, 1-29-14, “Yes, Reformers, we SHOULD Talk About YOUR Kids’ Schools.”
Link: http://jerseyjazzman.blogspot.com/2014/01/yes-reformers-we-should-talk-about-your.html
It’s an all-star line-up: Cami Anderson, Chris Christie, Rahm Emanuel, Michelle Rhee, Bill Gates, Meryl Tisch, John King, Michael Bloomberg, Barack Obama.
Right from their Playbook for $tudent $ucce$$: Do unto OTHER PEOPLE’S CHILDREN what they refuse to have done unto THEIR OWN CHILDREN.
I have so much more to say, but I want to end on a positive note.
The parents, the teacher, and above all, that young boy—heroic and admirable.
😎
LikeLike
Bureaucracy dehumanizes people. Turn people into a record and it is “easy” to treat them like data. Data doesn’t worry, get frustrated or angry. Data doesn’t feel pain, confusion or sadness. If we are stripped of human context, we can be manipulated to fit whoever’s mold needs our numbers. Now the family must deal with obtaining multiple copies of Ethan’s death certificate, so they can prove to everyone that he is actually dead. I am sure the same bureaucrats that wanted documentation from hospice would be pleased to receive a certificate to close up their file nice and tight.
LikeLike
The following comment appeared in an article in my local Anton newspaper. I liked the comment so much that I saved the article. I believe the comment is unfortunately poignant here: “The most dangerous people in the world are unquestioning functionaries who will put into practice the whims and desires of leadership regardless of logical conclusions or implications.” Michael A. Miller, Anton News, February 5-11, 2014.
LikeLike
Very good.
LikeLike
Because it has never been about the child.
LikeLike
” ‘The most dangerous people in the world are unquestioning functionaries who will put into practice the whims and desires of leadership regardless of logical conclusions or implications.’ Michael A. Miller,”
That’s for damn sure especially the ones (GAGA teachers) who should be fighting against the idiocies that harm children everyday–educational standards and standardized testing “regardless of the logical conclusions or implications. Those “leaders” (administrators) bully the “unquestioning functionaries” (teachers) into accepting and “putting into practice” these educational malpractices even to the extent of what they did to Ethan and his family. May he rest in peace and may his family re-enjoy the good times they had with Ethan.
LikeLike
This is a sad example of what happens when anonymous bureaucrats rule from afar. Disgusting. This is NOT the American way. God bless this young boy, his family and his amazing teacher.
LikeLike
Would the politicians allow their family members to be treated in this manner? I think and hope not. Then how can they justify doing this to Ethan and his family? We have clearly lost all sense of our educational mission and our shared humanity.
LikeLike
This simply brought me to tears!
LikeLike
Reading the story leaves me speechless. What kind of morons are involved in education today that something like this, so painful and horrific would take place? Takes my breath away! Condolences to the family and how fortunate Ethan was to have such a wonderful and caring teacher.
LikeLike
I am beyond horrified. This cannot be true! I have never heard of a more heartless, reprehensible, dastardly “requirement” placed on any child or the child’s family. The school’s requests should go unanswered and ignored. There has to be a way to bring this cruel fiasco to the attention of the media. There simply must be a public outcry! I will be praying for Ethan and the people who love him ❤
LikeLike
A sick system taken to its ultimate conclusion,
LikeLike
I have no words for this. I do not know how the people who have created such a dysfunctional educational system can learn about a boy like this and look themselves in a mirror. This is profit over people run amok. When something like this happens, no papers should ever be needed. But the same thing happened last year here in New York. A child was hit by a car, but the head of testing needed to be sent a waiver form with MEDICAL EVIDENCE that the child could not take a CCLS state assessment. Obviously, the testing coordinator of the school would not bother these parents who child was barely hanging onto life.
LikeLike
T$ey don’t have a clue what adding value to a child’s life (or anyone’s for that matter) even means. Hint – it’s not measured by a test score.
Added to the horror is the thought that maybe this child’s information is in some longitudinal data system somewhere.
One of the seven deadly sins – greed – turns humans into animals.
LikeLike
Like the case here in Florida, in Orlando, where the teacher was getting nasty notes about the lack of annual yearly progress being made by her student BORN WITH BARELY MORE THAN A BRAINSTEM.
LikeLike
That brother of a notorious W, Florida State of Education, and Duncan (Done-Can(ned!!) well deserve an F for inappropriate impartment of accountability. Punitive accountability should be imposed exactly on these clueless reformers for ripping off billions of dollars from taxpayers and torturing students, parents, and schools for their own greed.
LikeLike
I have a similar story from Louisiana! I am the principal of a middle school in south Louisiana. Last year, while I was still the assistant principal, one of my 8th graders had to leave for Memphis to go to St. Jude for treatment of his Osteosarcoma, which had spread. In Louisiana, 8th graders must take and pass the LEAP test to move to high school. This child has his leg AMPUTATED to save his life.
I was unable to find anyone at the department of education who could help me with this child’s special circumstance. As a matter of fact, for him to have the option to move to high school, I had to complete a form that allowed me to administer the test to him in an alternate testing environment. I went to Memphis, LEAP test in hand, and administered his test over a four day period. He took his test while working around his chemotherapy and radiation appointments. He was a total champ about this absurd and offensive situation! And, to all of you who are wondering, he PASSED his test and is in 9th grade now. Although he is still in Memphis receiving treatments, when he returns he can go straight to high school.
Our community was so outraged by this story and the lack of human dignity attached to this insensitive requirement for this child to take the test, that the entire community came together. My trip, which was initially going to be self-funded, became entirely covered with the help of the local fire department, who drove me to Memphis, and generous donations from various businesses. Our student body was so supportive of their classmate that they raised and donated almost $10, 000.00 to St. Jude.
When I had the honor of handing the check to Richard Shadyac, the CEO of ALSAC (the organization that fundraises for St. Jude), even he was apalled that the child had to take the test. From what my very famous student tells me (you’ve seen him announcing the Saint’s first round pick at the NFL Draft, you’ve seen him on Kelly and Michael, and he is a always speaking on behalf of St. Jude), when he and Richard speak at fundraising events for St. Jude, Richard still mentions my trip to Memphis and what an entire community did to fight the good fight against wearhousing education!
LikeLike
I don’t know what else we need to know about the people who are in charge of education. This tragic story and the so many other stories we don’t know even know about have one thing in common, leadership that is the perfect example of the children’s song Three Blind Mice. We need to be down at the White House, wherever they meet to stop the insanity. These talking heads don’t understand anything about the children we serve as educators. Yes, we serve to meet the educational needs of our students not the stupidity of people who have ensured that they were promoted to the highest levels of education by political ties. They probably have never been inside a special education class except for a newspaper photo. Our leaders ( not all but a large number in the education field) love the sound of their own voices giving worthless praise to themselves for doing nothing. People are tired of do nothing leaders.
LikeLike