This past Thursday my daughter and I, along with her nanny, met with three members of the Commonwealth of Massachussets’ House of Representatives. In the order of the picture, Representative Barbara L’Italien, Representative Tom Sannicandro, Representative and Majority Leader John Rogers. It was a great meeting and they are interested in helping. I will update with more information shortly.

her teacher
the IEP team
the school headmaster
the school district administration
the MA Department of Education
the Commissioner of Education

No one has stepped up to the plate. Basically, they are all “following the law.” This is so ridiculous … ok, so now we change the law.

It is interesting that the Commissioner references the IDEA laws but not the NCLB.

As my staff has shared with you, state and federal laws, such as the Individuals with Disabilities Education Act (IDEA), require that all students be provided access to and the opportunity to make progress in the general curriculum. In addition, you may be aware that the Department has created a guide to the Massachusetts learning standards specifically for students with significant cognitive disabilities. This guide outlines tasks and activities at varying levels of complexity in each content area, and includes skills appropriate for students with even the most severe disabilities.

This statement shows that the Commissioner unfortunately does not have a grasp of the category of “severely disabled.” The idea of my daughter making “progress in the general curriculum” is absurd and MCAS-Alt testing for her does not and cannot show that she is “provided access to and the opportunity to make progress in the general curriculum.” The guide he refers to for students with “significant cognitive disabilities” does not include anything that is relevant to my daughter as far as I can find. It is obvious that the concept of a child who has absolutely no communicative abilities, no ability to perform any task requested of her is one that did not play a part in any of the design or planning of this assessment. I would do anything possible to have the Commissioner and his staff spend just 30 minutes with my daughter. If anyone knows how to arrange this, please let me know!

Nancy Hanson of the DOE has told my daughter’s teacher that if she raises her head for five seconds while she is being spoken to in English, that counts for part of the English requirement. What on earth counts as part of the History requirement is unknown to me, but it has been made clear to my daughter’s teacher that it MUST be in the context of history. Maybe if she drools while being told of the nuances of the Emancipation Proclamation she will pass.

The Department of Education is apparently bound by the laws of the Commonwealth and the NCLB as well as their own lack of understanding of this particular population. We must work to modify the laws and regulations concerning the MCAS, especially and specifically how it deals with the severely disabled student.

The idea is for accountability and assessment, as far as I understand. That will NOT be accomplished by testing my daughter in Math, English, History and Science. There are other ways. Accountability and assessment are vital, I agree and support that. But not at the expense of these students. Not testing and grading her in absurd ways.

Please help me modify the NCLB as well as the laws in the Commonwealth to take into account one population that cannot speak for itself, the one population arguably in the most need for valid accountability and assessment. Accountability and assessment of those responsible for the “education” not those who are “learning.”

I have run out of options through the educational channels and now turn to our law makers. The Honorable John Rogers, State Representative and Majority Leader has agreed to meet with me to discuss these issues and I greatly appreciate his time and look forward to our meeting.

Please write to me with any ideas and information.

With respect to the first issue you raise, I understand that you would like your daughter not to be assessed on the MCAS. As members of my staff have informed you, and as I indicated in a statement issued to the press in June, all students educated with public funds, without exception, must be assessed by MCAS in accordance with state and federal law. As we have shared with you, if a student has a disability, the student’s IEP Team determines whether it is most appropriate for the student to participate in the standard MCAS test (with or without accommodations) or in the MCAS-Alt, an alternate assessment process for students with disabilities, particularly students with severe cognitive disabilities. The MCAS-Alt is based on a body of student work (portfolio) collected by the student’s teacher throughout the course of the school year.

It may be helpful to understand the purpose of the laws requiring the assessment of all students, including students with severe cognitive disabilities. The legal requirements underscore the importance and intrinsic value of educating all students, irrespective of disability. The law also ensures that schools are accountable for providing all students access to the academic curriculum. In keeping with these laws, MCAS testing is intended to ensure that all students are provided access to the general curriculum and have the opportunity to improve their skills in the content areas. MCAS results allow administrators, educators, and parents to see what students have learned and to set goals for students. Nearly 8000 students statewide, most of whom have significant cognitive disabilities, participate annually in the MCAS-Alt; among these are students with severe communications disorders.

In your letter and in our telephone conversation, you referred to Massachusetts regulation 603 CMR 30.03(3)(b) as the basis for requesting a waiver of the MCAS requirement for your daughter. This regulation has been cited out of context. The regulation refers to the legal authority of the commissioner to allow a student in the class of 2010 to be assessed in a high school science content area later than grade 10 in cases where a student transfers to a Massachusetts public school district after grade 10 or cannot be tested in Grade 10 due to illness. I can confirm that I, as commissioner, have no authority under state or federal law to exempt a student who is educated with public funds from being assessed on MCAS.

With regard to the second issue you raise, I understand that you believe that, due to the nature and severity of your daughter’s disability, it is inappropriate for your daughter to receive instruction based on the standards contained in the curriculum frameworks. As my staff has shared with you, state and federal laws, such as the Individuals with Disabilities Education Act (IDEA), require that all students be provided access to and the opportunity to make progress in the general curriculum. In addition, you may be aware that the Department has created a guide to the Massachusetts learning standards specifically for students with significant cognitive disabilities. This guide outlines tasks and activities at varying levels of complexity in each content area, and includes skills appropriate for students with even the most severe disabilities. Special educators have used this guide as the basis of instruction for their students, as well as for compiling their MCAS-Alt portfolios. In response to your concerns regarding the “self-evaluation” component of the MCAS-Alt, I want to reassure you that this component is optional, as outlined in the MCAS-Alt Educator ‘s Manual posted to www.doe.mass.edu/mcas/alt/edmanual.pdf.

The Department has been in touch with Superintendent Bill Lupini about your concerns. I encourage you to work with the superintendent and his staff to determine the most appropriate and effective strategy for delivering academic instruction to [your daughter].

I recognize that you have been disappointed and frustrated by the information Department staff has provided to you. While I acknowledge your disappointment, I fully support the integrity and accuracy of the information provided to you by members of my staff, especially MCAS-Alt Coordinator Nancy Hanson, and stand behind the professionalism and time that Nancy and others have given in their interactions with you.

I trust that you will work with Brookline school officials to construct a solution that is responsive to the requirements of the law and meets [your daughter]‘s educational needs. I appreciate your understanding that, unless new substantive developments occur in this case, or current federal and state laws and regulations are amended as they relate to this case, I consider this matter closed.

I offer you and [your daughter] my best wishes.

Sincerely,

Mitchell D. Chester, Ed.D.
Commissioner of Elementary and Secondary Education

I want to thank you for your time on the phone today. I believe the exchange of information between us was a good one and will bear fruit with regards to the MCAS and the severely disabled. We appear to agree fully on what the alternate assessment should be.

At this point I would like to respond to a couple of points that came up and to put them in writing as a way of verifying that I heard what in fact you were saying and vice versa.

The part of the law the I refer to in asking you to waive the exam for my daughter is 603 CMR 30.03(3)(b) and is found on your web site here: http://www.doe.mass.edu/lawsregs/603cmr30.html?section=03. I am not a lawyer, and actually I am a bit surprised that in fact you are given this option, but there it is. Please let me know your interpretation of it.

Since you do not know my daughter, one must keep in mind that she not only has no known form of communication, she has no known movements that are done with intent. She cannot scratch where she itches, cannot point, look somewhere on request, etc.

You stated several times that the test “should be tailored to the child” and that it is “not appropriate to ask the student to do something she cannot do.” Additionally, you mentioned that what my daughter “should be experiencing in terms of assessment should be very much tailored to her conditions.” I could not agree more with all of that. My issue is that the guidelines that the teachers must follow are completely void of those ideas.

This all brings me to the 2008 Educator’s Manual for MCAS-Alt. All the quotes to follow are from that document. My issue is that that document makes firm statements, has requirements, and demands things that now appear to be in complete contrast with your view of the what the alternate assessment should be for my daughter and for my son. All the page references offered are to that document.

The first quotes show that the assessment must assess to the Curriculum Frameworks. There is no apparent “wiggle room” here, so anything done with the test MUST be to the Curriculum Framework. Hence any observation of my daughter must be with regards to Math, English, and Science.

“the purpose of the MCAS Alternate Assessment (MCAS-Alt) is to assess the achievement of students in relation to knowledge and skills specified in the Massachusetts Curriculum Frameworks. … These students participate in MCAS through the alternate assessment portfolio, which in accordance with the law, must be compiled and submitted in the same content areas and grades as those in which standard MCAS tests are administered. (Commissioner’s Forward)

The No Child Left Behind law and the Individuals with Disabilities Education Improvement Act of 2004 reinforced that all Massachusetts students, even those with significant disabilities, must receive instruction that is aligned with the skills, concepts, and knowledge supported by the learning standards in the Massachusetts Curriculum Frameworks. (page 10)

The No Child Left Behind law requires the administration of statewide MCAS assessments (including alternate assessments) in ELA/reading and mathematics in grades 3-8 and in grade 10. Science and Technology/Engineering assessments are also required by law at least once in elementary, middle, and high school. At the high school level, MCAS and MCAS-Alt will assess Science and Technology/Engineering in specific disciplines (either Biology, Introductory Physics, Chemistry, or Technology/Engineering) either in grade 9 or 10. These requirements will allow for the documentation of each student’s academic performance and progress, and will ensure that students with significant disabilities are receiving instruction in important areas of the curriculum. (page 11)

My daughter’s introduction to the MCAS-Alt “must include”:

Student’s Introduction to the Portfolio produced as independently as possible by the student using his or her primary mode of communication. This introduction may be written, dictated, or recorded on video or audiotape and should describe “What I want others to know about me as a learner and about my portfolio.” (page 33)

How does my daughter do that? She cannot. As you stated to me, it is “not appropriate to ask the student to do something she cannot do.” So then that “must include” requirement is … what? To be ignored? Is “must include” just a suggestion?

The student then has over 50 data charts and data points to fulfill. These must be in English, Math and Science and then required by the Commonwealth:

A completed data chart must be included that measures the student’s accuracy and independence in performing tasks on at least five different dates based on a single skill or outcome in the learning standard being assessed.

Data charts must show that the student attempted to learn a new skill. (page 36, emphasis by DOE)

How do you show (it is mandated) that a student “attempted to learn a new skill” with a student who cannot control their motion, cannot communicate in any manner? This is required and is judged against the Curriculum Frameworks.

Step 9. Student self-evaluates.

At the end of a series of instructional activities in which strategies for reinforcement and/or consequences are used, it is important to provide opportunities for a student to evaluate and reflect on his or her performance. … (page 43)

How do you do this with my daughter?

Finally, and most important, how does this next piece get fulfilled with my daughter? Her portfolio is scored based on the level she learns, understands, and applies skills and knowledge. Stating this in your manual is stating that my daughter (or her portfolio) will be scored on her application of skills and knowledge of the Massachusetts Curriculum Frameworks. Your words, not mine:

The scoring of MCAS-Alt portfolios reflects the goal of standard MCAS tests, which is to gauge the level at which a student learns, understands, and applies skills and knowledge outlined in the Massachusetts Curriculum Frameworks. MCAS-Alt is intended to ensure that students with significant disabilities have been given access to the general education curriculum (i.e., the Massachusetts Curriculum Frameworks), as required by law, and to measure how much of this material they have learned. (page 49)

From the start, she cannot show any of that. How will any of this, that she cannot do anyway, ensure that she has been given access to the Curriculum Frameworks, as required by law?

Again, my issues are with the implementation, the mandates, and the guidelines surrounding the MCAS-Alt, not the fact that an assessment should be done.

My request for my daughter, and my son, to be exempt from the MCAS exams still stands. Additionally, I will gladly work with you and your team in any way appropriate to make the assessment be what both you and I seemingly agree it should be, that is “tailored to the individual functioning of the student.”

Thank you for your time and consideration.

On another note, there is a new web site, just starting, worth checking out (you will see why). Check it out here.

Now the more: I have spoken with a wonderful woman in the Florida Department of Education she is helping me research the basis of the Florida law that allows an IEP team to exempt a student from the FCAT (their NCLB testing). I will post as I know more. Stay tuned!

Dear Ms. de la Garza and Ms. McCann:

Together we represent the media, my daughter’s school district, and my daughter’s family. I am writing to you concerning the misinformation that the Massachusetts Department of Education is disseminating regarding my daughter directly and the MCAS-Alt exam indirectly. At this point, it appears to be an informed and deliberate misrepresentation and I believe that as a result we are unwittingly passing on false information.

The DOE has given each of us similar statements regarding my daughter and the MCAS-Alt. Here is the direct quote to me from Nancy Hanson, the MCAS-Alt Coordinator for the DOE:

“I want to assure you that participation in MCAS-Alt will not require your daughter to do anything she does not do every day at school.”

Note that on at least three occasions I have asked Ms. Hanson to explain that statement and she has declined to do so. In order to make that statement knowingly, one must fully understand what “participation in MCAS-Alt” means and what my daughter does “every day at school.” Without full knowledge of both, her statement cannot be based on the reality of the situation.

Believing that the employees at the DOE take their jobs seriously, I must go on the assumption that Ms. Hanson is fully aware of what is required for participation in the MCAS-Alt and that she is fully aware of what my daughter does every day at school. I cannot fathom that that statement would be made otherwise: to do so would be unacceptably irresponsible. Note that this same statement was made to Ms. de la Garza and thus repeated on the evening newscast, and made to Ms. McCann and disseminated within the school district.

My information on the MCAS-Alt comes from two sources. First is the 2008 Educator’s Manual for MCAS-Alt available on the MA DOE web site. Second is my daughter’s teacher. Please note that not only has she been trained by the DOE to properly administer the MCAS-Alt, she has also been trained to evaluate the MCAS-Alt that other teachers submit to the DOE. Thus, she has more training then the average teacher in this area.

Participation in the MCAS-Alt requires just that, “participation.” There are times the student is required to self evaluate. There are times the student will be asked questions. There are times where the student’s output is collected. This is all required and documented in the Educator’s Manual. The student must participate in some active form.

What does my daughter do “every day at school?” Unless Ms. Hanson knows differently than the school personnel, my daughter does not self evaluate. My daughter does not communicate at all. My daughter does not answer questions, because my daughter does not communicate at all. My daughter’s only output is physiological and that is not appropriate for collection for the DOE nor MCAS-Alt. My daughter does not write, draw, nor paint. My daughter does not sign: once again, she does not communicate at all.

To summarize, during her school day, my daughter is not asked questions since she cannot answer them, my daughter is not asked to produce independent output since she cannot do so, my daughter is not asked to self-evaluate since she cannot do so. Her participation in any activity is purely by her physical presence, not by any active, purposeful interaction.

My daughter never communicates any comprehension at all of Math, English, nor Science, NOR CAN SHE. The two of you have met Hannah and I am sure agree with me, her teacher, her aide, her medical team, and her family and friends, that my daughter cannot communicate at all. She may very well, however, fully understand her surroundings and often gives indications that she does.

The only way the following statement “I want to assure you that participation in MCAS-Alt will not require your daughter to do anything she does not do every day at school” is true is if the MCAS-Alt requires NOTHING of the student: no output, no answers, no attention, no academic interaction.

My point is that the statement made to the media, the school district, and the family that my daughter’s taking the MCAS-Alt will “not require [my daughter] to do anything she does not do every day at school” is misleading, inaccurate, and, as shown by my repeated request for clarification, evidently indefensible.

Assuming Ms. Hanson must knows what the MCAS-Alt requires, and feels empowered to make that statement, she must know what my daughter does every day at school. I only see two possibilities for the continued dissemination of the statement:

• There is a direct and specific intent to mislead the community, media, school district and family as to what the MCAS-Alt is with regards to the severely disabled
• Ms. Hanson has no idea what Hannah does every day at school and yet knowingly made a public statement multiple times with absolutely no facts nor information to back it up

Note again, I have on at least three occasions asked Ms. Hanson to explain the statement and she has continually avoided doing so.

Please help me stop this misinformation campaign by not repeating these untrue statements originating in the office of the MCAS-Alt coordinator.

Thank you for your time and consideration.

Thank you for your response.

“I am writing in response to your June 18 e-mail. You have indicated that your daughter has never received instruction in the Massachusetts Curriculum Frameworks (i.e., English language arts, mathematics, or science and technology/engineering). This is of some concern, since federal education laws require that all students with disabilities be provided access to, and the opportunity to make progress in, the general curriculum.”

Please note that you are totally avoiding my question once more and changing the subject. I will go along with that for the moment.

My daughter HAS been provided access to the general curriculum all along. She has not been taught to it since she cannot communicate at all. Why would you attempt to teach my daughter square roots when she cannot prove she has a concept of the number “one”? My daughter has never “passed” nor shown she has mastered that which is taught in kindergarten. She cannot speak, write, draw, point, etc. She drools rather well.

“By your account, she also does not have a system of augmentative communication in place, which presumably means she is unable to communicate or demonstrate what she has learned with any degree of regularity or reliability. The Individuals with Disabilities Education Act requires IEP Teams to consider “other areas of educational need” of the student, such as communication.”

The idea of communication, augmented and not, has been on EVERY IEP my daughter has ever had. The goal of her educators, care givers, family, and medical community has always been communication. She has been evaluated repeatedly and every day communication, augmented and not, is attempted, taught and stressed. It is not a matter of not trying to get her to communicate, that is something I work (and pray) for daily with my daughter. What you seem to fail to grasp is that this is beyond our ability. My daughter DOES NOT communicate. THAT IS WHY she does not have a system of augmentative communication in place, because NO ONE has been able to figure one out. Not school, not Children’s Hospital, not her family, her other doctors, other educators. Why do you blame the IEP?

“Both access to the curriculum and communication must be addressed in her Individualized Education Program (IEP). To the extent that they are not addressed, I urge you to discuss these matters with the members of your daughter’s IEP Team and by copy of this e-mail to the Superintendent of Brookline Public Schools, suggest that your daughter’s IEP Team meet to consider all her needs and revise her IEP accordingly.”

My daughter’s IEP has ALWAYS contained communication issues and those curriculum issues that are appropriate. This is not an issue with the IEP nor the IEP team. This is an issue with the MCAS-Alt and I would appreciate your understanding that. Her IEP meets and exceeds all the requirements of the DOE, ADA, and any other acronyms you want to add. I am asking about YOUR testing here, not the school districts oversight of her education, which, by the way, is wonderful.

“Your daughter’s IEP Team is charged with determining, how, not whether, she will participate in MCAS. If it is determined that she will participate via the alternate assessment (MCAS-Alt), the Department stands ready to offer her teachers training and technical assistance on how best to provide a program of standards-based instruction to students with significant disabilities.”

You seem to keep changing the subject. My question has nothing to do with the how or whether she participates in the MCAS, my daughter’s legal or practical access to the curriculum or anything else. My emails to you are simply about YOUR statement:

“I want to assure you that participation in MCAS-Alt will not require your daughter to do anything she does not do every day at school.”

All I ask is that you explain that. Your statement.

Please, Nancy, understand that the IEP team, and the school district are doing a great job for my daughter and everything that is required of them. It is simply the fact that MY DAUGHTER CANNOT COMMUNICATE AT ALL and that is not for lack of trying or expertise, it is due to an act of God. Plain and simple. She cannot answer or signal an answer to anything. She cannot “produce” anything. All she “does” at school is look around, randomly touch things, smile, laugh, and drool. That is not to say that the school is not attempting to teach, that is not to say that she is not learning, it is only to say that she is not communicating that she is learning. Understand the difference.

So then, maybe I can get a simple “yes” or “no” for this MCAS-Alt specific question since you are the Coordinator of such:

Can the IEP team specify that for the MCAS-Alt: “No data points nor data charts will be required and nothing produced by the student will be required and the student will not be required to respond at all to questions or situations presented.” ??

Yes or no? And if we cannot specify that, then, again, please explain your statement “I want to assure you that participation in MCAS-Alt will not require your daughter to do anything she does not do every day at school.”

Thanks for your time and concern.

The thing is that I have tried so hard for communication from my daughter for years. All I ask and pray for is simple binary communication, some yes or no response, with that we have everything. She cannot tell me where it hurts when she cries, if she is hungry or thirsty, if she wants this or that. Nothing. We have been to the best communication specialists, the school has always tried, it really is all I ask.

For this [expletive] at the DOE to bring it up and be surprised or whatever she said hit every button. How dare they require my daughter to be asked to self-evaluate. How dare they ask her math. This woman is beyond clueless. How dare the MCAS-Alt Coordinator insist my daughter do things that she cannot do.

My daughter has her own form of showing she understands. There are some games she plays when she is clear, when she is ‘with it’ for whatever that means. We have a game with her knocking the towel on her lap to the floor and me picking it up. It gets involved but when I then look at her and say “you are driving me crazy we need to stop” she looks at me, laughs and stops. At that moment she is in control of gross movements and fully understands me. She reacts appropriately to how I play these games with her, when she can, on her time, her control.

But those times are few and far between.
…
It must be made clear that this is like asking the blind to see, the paraplegic to walk, the mute to sing. My daughter cannot communicate for any exam, for anyone. What is so tough to understand?

One day I will be asking god why … not why he did this to me (two disabled kids), I have gotten past that, but why He did this to them. I am prepared for a rather Jobian answer. So short of that, I ask the DOE.