Earlier this year, 19 organizations, including the American Civil Liberties Union and the United Negro College Fund, issued a joint statement about what they would like to see in a newly written No Child Left Behind law, an exercise Congress is now attempting to complete.  The statement (which you can read here) surprised many parents and educators because of its embrace of faulty thinking about teaching and learning.

For example, it calls for the continued annual standardized testing of all students in grades 3-8 and at least once in high school even though there is no real evidence that this has improved equity or student achievement. It further says that alternative assessments for students with disabilities be limited “only to students with the most significant cognitive disabilities, up to 1 percent of all students.”

Up to 1 percent? One percent is only an estimate of the number of students with the most significant cognitive disabilities. This rule means that the other 99 percent of students with disabilities have to take the same new Common Core tests as students without disabilities, though with accommodations that can include extra time or having the test questions read aloud to them. The hardships this puts on students with disabilities and their families can be excruciating.

[Read: Revolt against high-stakes standardized testing growing — and so does its impact]

A few years ago in Florida, a boy named Michael born without the cognitive part of his brain was forced to take alternative standardized tests mandated by the state even though he couldn’t tell the difference between a car and a boat. The state finally gave him a waiver, but many parents with struggling children say that giving any standardized assessment to their child is useless. Early last year, Andrea Rediske, the mother of then 11-year-old Ethan, who was born with brain damage and suffered from cerebral palsy, was asked by the state of Florida to prove that her son could not take the state’s alternative exam — even while he lay dying in hospice care. He passed away at home in February 2014.

It is true that some members of the disabilities community have in the past embraced annual testing of all students under the idea that it is the only way that this subgroup of students will be given attention in their public schools. If schools are held accountable for the test scores of these students, the thinking goes, then educators will pay attention and give them the help they need. That was the underlying principle behind the annual testing of No Child Left Behind, but there isn’t real evidence that high-stakes standardized testing has led to more equity for students. Besides, such thinking presumes that requiring testing is the only way to ensure that minority and disabled students get attention.

[Read: What are all these civil rights groups thinking?]

Some parents and grandparents of children with disabilities recently wrote a raw open letter to the civil rights groups about their statement and the push to continue standardized testing for students with disabilities. The letter was published on the Web site of the Badass Teachers Association. Here it is (followed by some comments from parents that were attached to the post after it was published, including one by Andrea Rediske):

We are a coalition of parents who have children with disabilities.  On January 11th a statement was released by 20 Civil Rights groups that supported  each state’s adoption of college and career ready standards, aligned statewide annual assessments, and a state accountability system to improve instructions.  As a coalition of parents we strongly say to you – YOU DO NOT SPEAK FOR OUR CHILDREN!

The idea that students must be tested annually from grades three through eight and once in high school in order to achieve “equity” for all students is fatally flawed.  You presume that high-stakes standardized testing has led to more equity for students but there is NO evidence that it has.  You presume that high stakes standardized tests are valid and reliable measures of what students know and how much teachers have contributed to student progress, but assessment experts have reported to the contrary.  You presume that requiring testing is the only way to ensure that disabled students get attention, but that thinking is fatally flawed.  Which begs the question, why on earth would civil rights groups think that it is a civil right for students to take a standardized test that treats them all the same when each are unique individuals who have a broad range of needs, goals and abilities?

Our children have a broad range of disabilities.  Some are ADHD, some have autism, some are severely delayed, some have depression, anxiety, and some are dyslexic.  We want to be crystal clear on this matter:  We do not support the Common Core, we do not support annual high stakes testing, and we do not support testing that is used to punish our children, teachers, and schools.

The Common Core State Learning Standards has ushered in a system that has devastated most children with disabilities.  All one has to do is look at the Common Core assessments from New York where 95 percent of the children with disabilities failed.

The Common Core standards render our children frustrated, defeated, and feeling like failures.  We see this every day in our homes.  Do you?

Why must our children deal with text passages that are too complex and math problems that are two to three grade levels above their abilities? The Common Core Learning Standards are experimental and not based on research or evidence.  Children with disabilities are entitled to research-based instructional practices yet much of the pedagogy compelled by these experimental standards flies in the face of established educational research.

Additionally, the standards were created largely without the input of special education teachers.  Teachers are forced to teach to a one size fits all script that leaves very little room for modification and a demand that certain standards be taught at certain grade levels that may not be at the grade level our children are working at.  What happens to our children who are not reading at grade level but are forced to learn standards that are taught at grade level?  In 2004, with the reauthorization of the Individuals with Disabilities in Education Act students with disabilities were required, as much as possible, to be included into the general education curriculum.  For many of our children, this was working and teachers could modify work and tailor it to a child’s pace.  The Common Core Learning Standards demand, and script, grade-specific lessons that leave no room for modification or pacing that  meets the needs of our children.  As a result, the learning moves on and our children are left behind.

Federally mandated yearly high stakes testing often results in abusive practices.  Mandated standardized testing is often characterized by a lack of access to the testing accommodations indicated on a student’s IEP and forces students to submit to tests that rival the medical boards and SATs in length.  These tests are forcibly administered to children despite the fact that test content is often years beyond the student’s present levels of performance.  All of this is done without any regard for the emotional well-being of the individual student.  One only needs to look at the case of Ethan Rediske, a severely disabled child, who was forced to take the Florida State test while in the hospital.

Often times these tests are not returned to teachers in a timely manner and yield very little specific information about an individual child’s strengths and weaknesses.  When the test administered is years beyond a student’s current academic performance levels, these tests yield absolutely NO usable information.  These tests are not diagnostic in nature and therefore cannot be used to support our children’s learning.  Ultimately, these harmful tests exist solely for the purposes of accountability.

We do not object to adaptive standardized academic assessments such as the WIAT III and the Woodcock Johnson or benchmark reading assessments that allow the teacher to match the assessment to a student’s projected performance level and move up or down accordingly.  We support these assessments as they minimize the amount of time spent testing while simultaneously limiting the amount of needless frustration experienced by our children.  They provide immediate, detailed and insightful information about a student’s learning profile and their specific areas of strengths and weakness.

Consider the experience of a fifth-grader diagnosed with both a learning disability and ADHD who has the testing accommodation of double time taking the New York State Common Core-aligned test.  The English Language Arts test in 2014:  Imagine this 10 year old, 5th grader, receiving double the allotted 90 minutes for consecutive days.  Imagine the anguish of a ten year old who must sit for 9 hours of testing over the course of three days only to experience a similar test a week or two later when he or she is compelled to take the New York State Common Core math test! This is state sanctioned abuse, plain and simple.  Imagine how this child would benefit from spending these 18 hours learning rather than testing.  Shame on your for supporting this!  The fact that you would support such a practice is reprehensible to us.  We as parents DO NOT support this and will tell you that it destroys our children physically, emotionally, and mentally!

While we support accountability, we believe that accountability should not be based on test scores.  Accountability can be measured when one walks into a school building and sees that our children are being taught by creative, out of the box, compassionate people.  These qualities cannot be measured by a test score.  The use of test scores to evaluate the effectiveness of our children’s teachers will only encourage the best and brightest teachers to shy away from working with the most challenging students as these scores do not reward innovation and differentiation.  In addition, to be forcibly subjected to abusive testing practices our children are forced to contend with the knowledge that their scores are being used to fire the teachers they love and trust.

Annual, one size fits all, testing and test based accountability has created an environment for our children that is about blame, punish, and fail.  Under a test based accountability system for teachers, many children with disabilities enter school and within the first week are subjected to a baseline test on content, that has yet to be taught, only to fail miserably.  Imagine being any child, but especially a child with a disability, who is made to feel like a failure on the second day of school.

We asked one special education teacher in New York, a state that holds teachers accountable based on test scores, how this looked in real life.  Here is what she told us:

“In the beginning of the year, Student A, a student with anxiety and depression,  got a 28 on the baseline test. We had to give this test the second day of school.  He was very upset and as much as I told him the score would not count, he was still upset.  He was angry when he was taking the test because he felt that he didn’t know anything and it wasn’t fair.  It was difficult to get him to finish the test.  At the end of the year Student A had to show a point growth for me to get credit for him.  In my district we negotiated a 30 point growth (the state test).  At the end of the year this student got a 42 on the state test (the new Common Core exam).  I didn’t get the points for him, nor 15 of the other 18 kids in my class.  I was deemed an ineffective teacher last year and I have been teaching special needs kids for over 25 years.  Many of my students have gone to college or are working successful adults.  We all, students and teachers, feel defeated.”

No Child Left Behind presumed that teachers and schools simply did not have high enough expectations for disadvantaged students and that was the reason for the education gap.  Factors such as hunger, sickness and violence were not considered in the poor performance of students.  We know now that No Child Left Behind has been an utter failure.  In fact the failure of No Child Left Behind is one of the battle cries of Common Core.  We would like to remind you that civil rights groups, and some of the key people behind the joint statement, were advisers to the key legislators who worked on the bill and supported No Child Left Behind.   You were wrong then and you are wrong NOW.

We urge you to reconsider your position in support of Common Core and the testing associated with it before more students are needlessly sacrificed as a result of this fatally flawed and harmful policy.

In closing, we will repeat that YOU DO NOT SPEAK FOR OUR CHILDREN. You claim that annual testing is  an essential to further the legacy of civil rights and equality but in fact you are supporting a practice that not only harms many children with disabilities but also discourages our most talented special educators from working with the most challenging children.  You are supporting a practice knowingly and willingly that sets our disabled children up to fail as it ignores learning differences.   It is akin to making a child in a wheelchair enter a school building without a ramp.  WE would argue that you have put policy above the dignity and human rights of our children.  Experimental learning standards such as the Common Core,  federally mandated one size fits all annual high stakes testing,  and test based accountability are in fact impeding our children’s right to a free and appropriate education.   We are asking at this time that you retract your support for annual high stakes testing and support our children with disabilities and their right to a free and appropriate education that meets THEIR NEEDS!

Parents/Grandparents of Children with Disabilities
Kim M. , New York
Marla Kilfoyle, New York
Judith Strollo, New Jersey
Amy Bahena-Ettner, Wisconsin
Jamie Bowsher, Ohio
Ken and Mary Lou Previti, Florida
Martha Bobbit Meyers, Florida
Deborah  Martin, Virginia
Lisa Rudley, New York
Sue Cavanaugh, Texas
Lorri Gumanow, New York
Mindy Cahill, Virginia
Andrea Pratt Rediske, Florida
Tina Andres, California
Julie Ardito, New York 
Jeanette Howes, Michigan 
Lianne Donovan, Oregon
Jeff Bernstein, New York
Katherine Lin, Indiana
Deb Stahl, Maryland
Aaron Sorenson, New York
Shelby Witmer, Pennsylvania 
Kerry Palumbo, Pennsylvania
Daisy Mitchell, Florida
Vikentia Cox, New York
James & Luz Christina Mooney, Saugerties NY
Lana Capps, Virginia
Anna Shah, New York
Clyde Gaw, Indiana
Jennifer Garrity, Florida
Julie and Mike Santello, Florida
Shannon Bryant, New Hampshire
Michelle Cosgrove, Florida
Colleen Daly Martinez, New Jersey
Debbie Rice, California
Sharon Antia, Massachusetts
Jennifer Fox, New York
Kelly Ayen, New York
Jennifer Goodson, North Carolina
Susan Dommer, Virginia
David Walrod, Virginia
Shelley Stover-Ling, New York
Bianca Tanis, New York
Julie and Robert Borst, New Jersey
Ilene Ballato, East Meadow
Cindy Stickline-Rose, Maryland
Jodie Brunn, New York
Judy Woodley, California
Cheryl Denton, Montana
Cathernine Mauro, New York
Christina Montanye, New Jersey
Christine Zirkelbach, New York
Ruth Fuller, New York 

After the letter was published, a number of other parents wrote supporting comments, which you can see here. They included:

Julie Ardito February 17, 2015 at 6:23 PM

I am a public school teacher with a son on the Autism Spectrum. He is in 6th grade; in a private school. Last year we we’re dragging him out from under his bed to get him to school. The pressure and inappropriate expectations were crushing him. Now he’s in a Montessori school…..and liking it. Please add my name; Julie. Ardito

Andrea R February 17, 2015 at 5:50 PM

My name is Andrea Rediske, and my son Ethan passed away a year ago. He was severely disabled due to a birth injury, and had cerebral palsy, epilepsy, developmental delays. At age 11 when he passed away, he was the developmental equivalent of a 6-month old. As a student in the Hospital/Homebound program in the Orange County Public School district in Orlando, FL, he was forced to take standardized tests for two years until we secured a waiver. As he was on his deathbed, the state and local school district demanded paperwork proving he was indeed dying in order to receive the waiver again last year. Both our family and his teacher were harassed by the state and the school district when we went public with our story.