Synopsis

(Note: Extremely minor changes to hide my daughter’s identity)

Abstract
I am seeking to have my severely disabled daughter excused from taking the tenth grade NCLB exam during the next school year. She is non-verbal and incapable of being tested in any educational sense. Any information gathered from the non-standard exam she would be given would be of no use to any one or any institution. Additionally, the potential stress and emotional effects on my daughter are very likely detrimental.

Background
My daughter has been diagnosed with an in born metabolic disorder. Because of the deficiency, she is non-verbal, non-mobile, and globally developmentally delayed. She cannot communicate a simple yes or no. She cannot signal where she hurts when she is in pain. She cannot inform you if she is hungry or tired. She is 15 years old. The NCLB implementation demands that she be tested for her abilities in Math, English and more. She cannot pass any exam such as this since she has NO means of communicating. It is this testing I want to eliminate. This is not a reflection on her intelligence, knowledge or awareness, it is the statement that we do not know nor can we test what she does possess. Her eye exams include a modified EEG since she cannot communicate what or if she can see.

School
My daughter and I have been told that she will never receive a diploma. She does not receive grades nor a report card since the concept of such makes no sense. Her teacher is an excellent, experienced special needs educator with much NCLB training. She agrees that the testing for this specific population is problematic and, in my words, moot. I have written to my daughter’s headmaster expressing that I do not want Hannah to be tested and why, the text of the email included here.

Headmaster:
 
As you may be aware, my daughter is severely disabled and is a student in the special needs classroom.
 
I am writing to you in regards to the NCLB implementation, in particular the tenth grade testing scheduled for the next school year. I respectively insist that my daughter not be subjected to the complete waste of time, energy and resources that the testing requires of her and her teacher in addition to any added anxiety or emotional turmoil that it may create for my daughter of which we may never be aware.My daughter repeatedly and daily demonstrates her complete inability to show any conception or abilities she may have of Math, English, Science, Social Studies or any other academic subject. She has continually proven that she cannot communicate a simple yes or no, a simple choice of two options, with any discernable reliability or understanding let alone any type of knowledge of counting or even the existence of a number system. Whatever understanding and comprehension she may have, and yes, she may have a substantial amount, cannot be tested or assessed by any method known to today’s educator, medical or scientific community, or the community of advocates of the disabled.
 
As an extremely highly respected pedagogue has currently posted on his web site (in part):

“Freedom at our high school includes the right to define ones self, be ones self, and feel safe within that definition, free from disrespect and harassment.  Freedom at our school includes the right to express ones voice in our democratic decision-making and policy-making structures.”  – [Your words]
I am helping my daughter express her voice in this matter, with the complete and total support of her mother.
Thank you for your time and consideration in this matter.

Here is his response.

           hi, 

thank you for your thoughtful request that [your daughter] not take [NCLB] next year.
 i will consult with colleagues and get back to you on your request.

I have yet to hear from him again.

Massachusetts Department of Education
I have spoken to two employees of the special needs department concerning my daughter and the NCLB. They were able to clarify some issues about the NCLB but neither would say more than my daughter had to take the exam because that is the law.

What I did learn from them I confirmed in an email, to which they did not respond. What came from my conversation with one employee was this, as sent to the other:

To follow up on a question that you were not aware of the answer, ultimately it is the teacher who makes up the “questions” on the exam for my daughter. With the ”typical” tenth grade NCLB the state (or some other authority) determines the math questions (i.e.: what is the square root of 123). In my daughter’s case, the teacher will have strict guidelines as to areas to be tested, choosing a certain number of categories and subcategories as I understand it. At that time, the teacher will decide how to test my daughter for that particular skill (or what have you). Hence, the test is decidedly NOT standardized, it is not independent, it is not without accidental or deliberate prejudice. Whether my daughter shows progress, flat lines, or regresses can be (as opposed to “is”) completely controlled, and definitely affected, by the teacher and the testing chosen. That is true unless the test is exactly identical every time she takes it, which may not be such a bad idea.

The only answer to why my daughter must take the exam was “because that is the law.”

Detriment to My Daughter
It is a well documented and well known fact that my daughter cannot communicate in any meaningful way. Period. That is a fact. What is not known at all is what level her mind operates on. She may have the mind and understanding of a newborn, of a five year old or be on par with her peers. Every one of her teachers and doctors agree that this is not known, again confirming the fact that she cannot be tested. There is a large consensus that she functions mentally at at least a four or five year old level. But, alas, this is a feeling, a sense that trained observers and educated family have.

That being said, there are several reasons the testing is to my daughter’s detriment. As all of us, she may very well experience test anxiety. She may very well know that her future depends on the NCLB, as with all her peers. She may very well also know that she will completely fail the exam. How would one deal with knowing you had to take an exam that determines your future (SAT, LSAT, biopsy, …) and that you will absolutely fail since you cannot control the answer?

During the testing, my daughter will be asked questions or asked to perform an action such as choose an object, or make a choice. There is an excellent chance she will understand the question and she will have no way to do what is asked. She cannot control her motions. It is as if you appeared to be in a coma and are fully aware of your surroundings. All you want to do is scream to the doctors standing there, but alas, you have no control of your body. The frustration must be unbearable. I do not want to subject her to this.

My daughter is already dealing with being told she will never graduate high school with a diploma as her peers will. She does not receive grades. She knows she will fail this exam. Why, in fact, should she try anyway?

Information Gathered
There is no information to be gathered from testing my daughter. The test is different than any other test she took in the past so we cannot assess her progress. The test is different than any other test given to other students so we cannot assess her abilities relative to others, other than the fact that they are better than her since she will score a zero. The test is designed by school personnel who have a vested interest in the outcome of the tests given to its tenth grade students.

My Request
I respectfully request that my daughter not be subjected to the testing involved with the NCLB regulationsand their implementation in this state.

Summary
My daughter is a severely disabled young lady. She cannot communicate at all for academic purposes and hence any form of academic testing is futile, as information gathered from her failing a customized non-standard form of the NCLB will not be useful to anyone. The stress, anxiety, disappointment, and effects on self image and value that she may experience far outweigh any other considerations, given that this testing is a senseless and potentially pernicious exercise in following a law that is not relevant to Hannah’s situation as a severely impaired child. Given the above considerations, I do not want my daughter to be subjected to the NCLB exam.