Several years ago, I published several posts about a boy named Michael who was born without the cognitive part of his brain but was made by the Florida Department of Education to take a state-mandated standardized test. Michael, as I wrote then, couldn’t tell the difference between an apple and an orange, but his caretaker was still forced to administer the test. He later won an exemption, but Michael was hardly the only child with severe disabilities who faced this kind of treatment.

Ethan Rediske was another. Ethan, who passed away in 2014 at age 11, was born with severe brain damage and had cerebral palsy. As he lay dying in a morphine coma, his mother, Andrea, was required to provide documents proving that he was unable to take the Florida-mandated test.

Now, a mother named Paula Drew is fighting the same kind of battle with the Florida Department of Education. Paula’s daughter,  15-year-old Madison Drew, has cerebral palsy and cannot speak. She suffers from a number of conditions related to her condition and takes several medications daily to prevent seizures, which can affect her cognitive abilities, a doctor’s written diagnosis shows.

Drew said she sought an exemption from state-mandated testing, but Pam Stewart, the Florida education commissioner, denied the request. Drew then requested a hearing to ask for reconsideration, and Stewart refused to grant one. Paula Drew wrote in an e-mail about Stewart’s decision:

In her most recent letter, she states that she’s had a “team of experts” review the documents submitted, and even admits that the “documentation supports the definition of a child with medical complexity,” her “experts” feel that my daughter should be tested. The last time I checked, not one of her experts has ever met my daughter, while her doctor and I are more reliable “experts” when it comes to my child. It blows my mind how this woman thinks she has the final say and I am given no recourse whatsoever.  That’s not good enough for me.

I asked the Florida Department of Education for comment. While not speaking specifically about Madison Drew’s case, Meghan Collins, a department spokeswoman, said in an email: “Florida state law states that participation in statewide standardized assessments is mandatory for students in public schools. However, there are two types of exemptions that can be submitted by a school district to the state: medical complexity and extraordinary exemption due to circumstance or condition (extraordinary exemption). … All requests are considered on an individual basis.”

That response reflects the reasoning behind why Florida — and other states, as well as the U.S. Department of Education — insist that kids with impaired cognitive ability take standardized tests: It is pure boilerplate.

They say, nearly every child can learn something and be assessed in some fashion. In a 2014 letter to teachers, Stewart wrote in part: “We cannot and should not return to the days where we tacitly ignore the needs of children with special needs by failing to ensure they are learning and growing as the result of teachers’ excellent work.”

Students began taking the Florida Standards Assessments last month. Officials at the school Maddy attends told Paula Drew they would alert her when it was time for Maddy to take the test, and Paula Drew said she would keep her daughter home at that time so it cannot be administered. The scores on these tests are used in part to evaluate teachers, and Paula Drew worries that her daughter’s scores could be used to unfairly evaluate her teachers.

The requirement that students with severe disabilities take high-stakes assessments that critics say are useless is one of the ugliest parts of test-based school and educator accountability systems. Though in the last year or so education officials at the state and federal levels have conceded that young people are tested too much and that it is time to cut back,  it has yet to happen in any serious way, and pressure remains at the federal level for states to test at least 95 percent of their students every year or face possible sanctions.

The Sarasota Herald Tribune reported that last year Florida received 19 requests for medical complexity exemptions from the Florida Standards Assessment and granted them all; of those 19, four were for one year; two were for two years; and the rest were permanent exemptions. The state also granted 11 other “extraordinary exemptions” for students with disabilities. The paper also reported that state data shows “there were 18,464 developmentally delayed students enrolled in Florida schools during the 2014-15 school year,” 579 of them with traumatic brain injuries.

In February, Paula and Maddy Drew appeared at a meeting of the Sarasota school board to protest. Maddy sat silently in her wheelchair while her mom gave this speech:

My name is Paula Drew and I am Madison’s mom, and I take that role very seriously.  As you have  undoubtedly gathered, Madison cannot tell you how she feels about being made to take the Florida Standards Alternate Assessment. Madison communicates in various nontraditional ways such as pointing, gesturing, a few signs, and through a communication app on her personal iPad. None of these methods of communication are fool-proof and are often subject to interpretation. Because of Madison’s disabilities, she has limited life experiences and may not be able to identify with certain types of questions on the assessment. I don’t know about you, but I would not want my pay, job security, or school rating based upon what she may say when asked particular questions.
I’d like to borrow a term used in Commissioner Stewart’s letter to teachers dated March 3, 2014, wherein she was defending her actions with regard to harassment of Ethan Rediske and his family while he was on his deathbed. In her letter she states, “It would be a moral outrage to deny that opportunity [referring to testing] to any child based on any reasoning, including special needs.”  Well, that certainly speaks volumes as to the commissioner’s morals and compassion and determination to test no matter what the cost!
What is a moral outrage is asking special needs children (or any child for that matter) to perform on a one-size-fits-all assessment.
What is a moral outrage is ignoring the child’s special accommodations outlined in their IEP [individualed education program].
What is a moral outrage is not listening to the parents of said students who find it abusive to subject their special needs children to this assessment for hours on end.
What is a moral outrage is using the results of said flawed assessment to rank students, calculate teacher pay, and assign grades to schools…but ESPECIALLY schools like Oak Park who service nothing but children with varying physical, intellectual, and/or emotional disabilities.
In 2014, as a result of the state’s harassment of families like the Rediskes, Senate Bill 1642 was passed.  That law restored a little bit of compassion and common sense to the state’s overzealous testing regime.  That bill allows for the exemption of medically complex children from taking standardized assessments.  Even though I made my position known 10 months ago, it was just last week that we were given the procedure on how to apply for such an exemption with only four days to gather the documentation from a physician and hold an emergency IEP meeting.
I requested a permanent exemption for my daughter as her condition will not change, and I already have enough paperwork and hoops to jump through on a daily basis just to address her basic needs.  I do not want to repeat exemption process every year. The Commissioner will have to grant the exemption. I was told that she most likely will not, given her past history denying most exemptions and the tone of her March 2014 letter. I would also like to note that I was told that Madison could be removed from her specialized school if I refused to allow her to be tested should the exemption be denied.
If the exemption for my daughter is denied and/or she is removed from her specialized school, I am hereby putting the School Board and Department of Education on notice that I intend to do whatever it takes to see that this law is adhered to.
In summary, I know that Madison will never go to college, get a job, or leave home. I’m okay with that.  All of the education and testing in the world is not going to change the fact that she’s severely disabled.  But, you know what, she’s happily disabled and because of that, I’m okay. Yes, she’s somewhat educable, but not to Florida’s “standards.” She goes to school to learn life skills. She goes to school to get social interaction. Madison is anything but standard!