Prium non nocere or “First, do no harm” is traditionally associated with the Hippocratic oath that medical doctors take. The premise of this quote is that no matter what end result you are attempting to achieve, whether it be curing a patient or educating a child, your first consideration should be that no harm be done in pursuit of the goal. When this is applied to the special education classroom, mandatory high-stakes testing for students with intellectual disabilities violates this principle on many levels.
According to the American Association on Mental Retardation website, the definition of mental retardation, another term for intellectual disabilities, is
A disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before 18. [There are five assumptions essential to the application of this definition]:
Limitations in present functioning must be considered within the context of community environments typical of the individual's age, peers, and culture.
Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.
Within an individual, limitations often coexist with strengths.
An important purpose of describing limitations is to develop a profile of needed supports.
With appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve.
Individuals with an IQ of 50 to 70 are considered to have mild mental retardation, a category comprising 85% of all individuals with mental retardation. Another 10%, with IQs from 35 to 50, are considered to have moderate mental retardation, with the remaining 5% having IQs below 35. Mental retardation, mental disability, and intellectual disability are interchangeable terms (American Association on Mental Retardation, 2003).
This year I found myself forced by state mandate to participate in a practice that I found to be both unprofessional and unethical: I was required to administer the new Georgia End-of-Course tests (EOCT) to my special education students, most of whom have mild intellectual disabilities.
I administered the Economics/Free Enterprise/ Business exam and the Algebra I exam to two groups of seniors less than 3 weeks from graduation. These groups were all receiving Special Education Diplomas due to their failure to pass the five sections of the Georgia High School Graduation Test (GHSGT), which the EOCT exams are destined to replace. When the retest of the GHSGT was announced last fall, this group of seniors was appalled to discover that their participation was mandatory. These students, who cannot independently write a topic sentence, took the writing section of the GHSGT, which basically requires the writing of a five-paragraph essay on a given topic. Needless to say, when the results came back, none of them had passed. When it came time for the remaining sections (Language Arts, Mathematics, Science, and Social Studies), it became apparent that our school had not been sent enough materials, and my students would not have to take the remaining sections. The relief in my classroom was tangible. An IQ below 70 does not indicate stupidity, and these students knew their chances of passing all five sections were slim. Whether they passed or failed, they would still receive a special education diploma. This group, at least, was comfortable with that outcome. They had no desire to retake a test they had already failed.
I was also required to administer the EOCT in Biology to a group of sophomores with mild intellectual disabilities. In order to relieve some of their quite apparent anxiety about their participation in this testing, I did explain to all three of my classes that this test would not, at this time anyway, affect either their course grade or their goal of obtaining a high school diploma.
When one of my students, a 19-year-old African American male named John (pseudonym), who is currently seeking employment, opened his Algebra I test booklet, he looked at me in disbelief and asked, “This is college stuff ain't it?” We were barely into the test, which I was reading to them, when we came upon a question along the lines of “What is the degree of factoring in this polynomial?” This same male student turned around and asked, “What the hell is that?” My own question is, What kind of mandated test question is that for a group of students who still use multiplication tables to do basic math calculations or who compute anything beyond simple addition and subtraction with calculators and scratch marks?
Our school chose to administer the EOCT in two consecutive daily sessions. When another one of my students, Julie, an 18-year-old white female with an infant son, who is already employed as a Certified Nursing Assistant, walked in the morning of the first session and asked what we were doing. I reminded her that we were taking the required end-of-course tests. She responded that she was not taking it. When she asked what the consequences of not taking the test would be, I honestly was not sure, and I told her so. I encouraged her to go ahead and take the test, while promising to find the answer to her question.
Once again, I was reading the test to them. We were to complete 45 questions each session. We were on Question 38 when Julie asked with a groan, “Do we have to do this whole book today?” I replied that we were stopping for the day on the next page on Question 45. John, who was sitting next to her, glanced at Julie's paper and asked, “How come she's got a chart on her last question? I don't have a chart.”
Even with my reading the test to them, we were on Question 38 before these students realized that the test I was reading was not the same test they were taking. The only reason they realized it at that moment was because of a picture (the chart) that was on some tests but not on others. We had spent 2 days on the Algebra I EOCT and none of them had ever noticed that the questions I was reading were not necessarily the same questions they were answering.
First, do no harm.
The No Child Left Behind Act, according to the U.S. Department of Education, is specifically designed to include all students in the state's accountability system. “Because it is critical to ensure that students with disabilities are not excluded from state accountability systems, the final regulations provide that the same grade-level academic content and achievement standards that apply to all public schools and public school students in the state will be applied to alternate assessments” (Education World, 2003). The federal government wants to ensure that no child is left behind in school, that all students are challenged, and that all students are allowed to participate in as many activities in the least restrictive environment possible for that student. These are all admirable goals if the individual disability level of each student is also taken into consideration so that the goals presented are challenging but achievable. Where, however, is the basic common sense in requiring a high school senior with an IQ of 60 who reads on a second-grade level and adds 8 + 4 on his fingers to demonstrate his knowledge by explaining the degree of factoring in a polynomial? Where is the compassion in requiring the student with an IQ of 67 who takes 30 minutes to do ten 3-digit multiplication problems to demonstrate her knowledge by explaining what the y-intercept is of a line with a slope of −3? Test questions such as these are just another way of pointing out to these students that they are different, to make them feel stupid, and to take another jab at an already fragile self-esteem. It is like kicking a puppy—pointless, random, and cruel.
Julie came in the second day of the Economics EOCT and refused to participate. I reminded her that the test would be coded, “Present—Not Participating” and a note would be placed in her permanent file to that affect. She did not care. She had a baby to take care of, a job she had already begun, and not only was she fine with receiving a special education diploma, but she was proud to have it instead of a Certificate of Attendance. As a teenage mother who dropped her son off at EvenStart every morning and drove to work every day after class, she has worked hard for both her diploma and her Certified Nursing Assistant certification. When she refused to take a test that will have no impact on her life, a test she does not— realistically and statistically—have a reasonable chance of passing, it is hard to argue with the logic behind her decision.
When Julie refused to complete her test, so did all but one of the remaining students. It is very relevant to add here that the only student who chose to go on and complete the test had a specific learning disorder diagnosis and not, as is true of the others, an intellectual disability.
According to the U.S. Department of Education, during school year 2000–2001, 11.9% of all students in the state of Georgia were served under the Individuals With Disabilities Act (IDEA) and/ or Chapter I of the Education Consolidation and Improvement Act. Of those students 9.5%, or 1.27% of total student enrollment in the state, had a diagnosis of mental retardation (USDOE, NCES 2003–060 see Table 1). Consistently over that past decade, approximately 50% of those students have been served in a separate class. This means over half of the students with mental retardation received educational services outside the regular class more than 60% of the school day. During this same period, fewer than 16% of the students with specific learning disabilities were served in a separate class (Table 2). By definition, students with any diagnosis other than mental retardation have IQs ranging from borderline to average to gifted. To compare students with “significant limitations both in intellectual functioning and adaptive behavior” to students with no intellectual limitations is like comparing apples and oranges. It serves no purpose and provides no reliable information about either group. To demand of students with mental retardation that they take a test designed for their peers who are headed for technical school or even college simply makes no sense. These students need to be tested on the curriculum to which they have been exposed—whether that be a modified general curriculum or a functional curriculum—or participate in the alternative assessment currently offered for less than 3% of all special education students. There is currently no reliable or meaningful assessment being done for students who are well-below grade level, are receiving a special education diploma, and yet are not classified as having moderate, severe, or profound intellectual disabilities.
Since 1976, the percentage of students with a diagnosis of mental retardation who have been served in federally supported programs for the individuals with disabilities has steadily declined to a fairly consistent rate; for the last 9 years, the percentage has been between 1.26% and 1.28% (U.S. Department of Education, 2002). Due to better testing and various other factors, the enrollment of students with specific learning disabilities more than tripled during this same period. The problem is not with the diagnosis of mental retardation; it is in the expectations that go along with that diagnosis. It is unrealistic and unfair to demand that students with mental retardation perform on the same level as their peers with specific learning disabilities, speech impairments, visual or orthopedic impairments, or other health impairments. Although all are categories of special education, the expectations are necessarily different depending on the disability. A student with an intellectual disability should no more be required to take these high-stakes tests than an orthopedically impaired student should be tested on his ability to jump hurdles or a visually impaired student be expected to critique the Mona Lisa.
Special education teachers across the nation understand that there is no realistic way to ever meet the expectations of a new federal law requiring that 99% of all children be performing at or above grade level by 2014. As shown in Tables 3 and 4, the achievement gap between regular students, students with learning disabilities, and those with mental retardation is huge, varying by as much as 69%. These teachers are frustrated with the lack of understanding exhibited by those who are making the decisions. No Child Left Behind mandates that schools bring all groups of students up to grade level on standardized reading and math tests, including special education students and those who do not speak English. If even one of these groups fails to meet progress targets for 2 years in a row, an entire school can be listed as failing and face an escalating list of sanctions. As Dr. Phil, guru of common sense, would ask, “How's that working for you?” Special educators know that expecting all special education students, regardless of disability, to be performing at or above grade level by 2014 or 3025 or 4367 is, in a word, ludicrous. As one teacher in Oregon succinctly put it,
These children are going to plateau at a certain level—that is the nature of the disability. These kids are not going to grow out of it, not going to grow up and be OK. It's sad, but that is the way it is. There is no way some of these kids can meet the testing standards. If they could, they wouldn't be with us in the first place. (CNN, 2003)
A teacher in Florida has a 15-year-old girl with autism in her class. This student is among her class's highest achievers because she can read on a third-grade level, even though she is easily frustrated and prone to angry outbursts. Because Florida requires age-appropriate testing, this student will have to take the ninth-grade FCAT exam. “The push,” she said, “is if they can hold a pencil, take the test.” Ivan Baratz, an advocate for special-education students in Broward County said, “I have Down syndrome kids forced to take the FCAT, and they don't even know how to bubble in [an answer sheet]. We don't need to put their face in the mud and kill their self-esteem” (Pinzer, 2004).
First, do no harm.
In Louisiana, 15-year-old Rebecca Hulse, who has intellectual disabilities, dreams of one day selling hot dogs at the Superdome. She speaks clearly and carefully answers questions but cannot count change or write a full sentence. This year Rebecca is required to take the state's LEAP exam. Even her mother gives her “a snowball's chance” of passing the test and moving on to the ninth grade. Ann Hulse, a special education teacher who adopted Rebecca 3 years ago said,
It's only going to totally frustrate her and ruin the progress we've been making with her. She's now at a kindergarten or first-grade level.. . . In her lifetime she will never be on an eighth-grade level. Never.
On a practice LEAP test, the girl answered fewer than 10% of the questions correctly. “She's going to fail the test and have to repeat eighth grade. She'll never be able to pass it.” Hulse said (Brown, 2003).
First, do no harm.
In Utah, a special education teacher whose job it was to teach students who have had little success in regular education and resource classes, stated, “These kids have severe disabilities and probably never will be on par with other kids. These aren't kids who have been left behind, forgotten, or who have fallen through the cracks.” She expects to see tears when these students take the statewide core curriculum tests next week. “Some kids, she said, will crumple up their exams. Others will be overcome by anxiety. It breaks everyone's heart to think that their work is going to be invalidated by the test. How do you work toward an unattainable goal?” (Toomer-Cook, 2003)
First, do no harm.
Tracey Newhart, who lives in Massachusetts, is an award-winning cook who has Down syndrome. Last year, Tracey won a local Knock Your Socks Off cooking competition by making the best spaghetti sauce in the amateur category. She has mental retardation, but she beat caterers in the competition. Tracey's dream was to apply for a Johnson and Wales University nonacademic degree program. The program usually takes one year to complete, but Tracey could take as long as 6 years. In the face of intense pressure from the state that included a threat to withdraw school funding and strip the school principal and superintendent of their certifications, Tracey's school district recently reversed a decision to grant diplomas to students who failed the MCAS exam. Tracey took the exam twice and failed it both times. She was not alone. The class of 2003 was the first that needed the MCAS to graduate. More than 90% of the graduates in Massachusetts passed, according to the Massachusett's Department of Education. Forty percent of the students who failed the exam are special-needs pupils (Myers, 2003).
First, do no harm.
Oregon mother Cynthia Payne, whose son has mental retardation, saw a need for change in the law:
In my hopes and dreams, I would love him to participate, to be a normal kid, but he is not. . . . And to penalize the school because he is not capable of that is insane. The range of kids in special education is so incredibly broad, and that makes it very difficult to make any kind of statement or box for everyone to fit into. (CNN, 2003)
In South Carolina, more than 75% of schools were listed as failing. The state's deputy education secretary noted that special education was the most common denominator (CNN, 2003) in the failing schools. In Tennessee, the Nashville schools director called it, “ludicrous, to give a [special education] student a test that they cannot read or understand, much less know the answer” (CNN, 2003). In Oregon, administrators representing 202 schools reported that their special education students had failed to make the desired progress in reading; 181 said that was true for math (CNN, 2003).
First, do no harm.
The pattern is nation-wide. Karl Wilson, state director of At-Risk Student Services in Utah, noted that they had a large number of students with disabilities who were taking core assessments and that with the appropriate accommodations, many were scoring proficient and near proficient. “But,” he added, “We're also finding as students with disabilities move up through the grades . . . the gap between [them] and their nondisabled peer group [grows]” (Toomer-Cook, 2003). Georgia's own test results document the same pattern. The State of Georgia K–12 Report Card for 2002–2003 shows that 34% of first graders with disabilities failed the Criterion-Referenced Competency Test (CRCT) in English/Language Arts. That same year 42% of third graders with disabilities failed the English/ Language Arts section, as did 73% of eighth graders with disabilities. It is no surprise, therefore, that 26% of high school juniors with disabilities failed the English/Language Arts section of the GHSGT. By 11th grade, large portions of students with intellectual disabilities have dropped out of school. The majority of the students with disabilities who are still in school and participating in the graduation test do not have mental retardation. In Massachusetts, counselor Joan O'Hara has seen expectations and student performance rise. She also sees some students frustrated because they cannot keep up. “We have kids who drop out and kids who don't drop out officially, but just don't come to school,” she said (Pappano, 2003).
The point of this argument is not to dispute that students with mental retardation not be allowed to participate in these tests, on which so much depends. The point is to call for some basic common sense. The decision whether to test or not should not be uniformly mandated at the federal government level. It should be a decision made by the team that creates the student's Individual Education Plan (IEP) each year, individual being the key word; IEPs contain personalized information relevant to each particular student. Special education and disability are not blanket terms. Each IEP contains goals customized to the hopes, dreams, plans, and abilities of the student for whom it is written based on input from parents, teachers (both regular education and special education) counselors, and the students themselves. Teachers meet with parents regularly throughout the school year to share test scores, concerns, modify goals, and make plans for the future. As another Utah teacher summed up: That's being held plenty accountable (Toomer-Cook, 2003). If the IEP team determines that participating in the school or state system's high-stakes testing is not in the best interests of that particular student, then why does the federal government, which has no understanding of that student, have the right to override that decision?
Why is Tracey not allowed to pursue her dreams in a nondegree program to which she is willing to donate 6 years of her life because she cannot pass a test over material she has the slightest chance of ever encountering again?
Why can't Rebecca be the best hot dog vendor at the Superdome? Who would you rather have selling you a hot dog—someone who is frustrated at his or her minimum-wage job or a smiling young woman who is absolutely thrilled to be there?
Why can't Julie go to her job instead of wasting 4 class days taking a test that means nothing to her life? Why do I have to explain to John that the Algebra I test he is looking at is not college level but basic for most high school freshman? I have no desire to be the one to rub his face in his disability. That is not why I became a teacher.
To expect all special education students to pass these high-stakes tests, including all but 1% to 3% percent of those who have mental retardation, is just simply insane. In a perfect world, all students would have a chance to pass these tests. The harsh reality is that all students do not have that chance. If they did, there would be no need for special education at all. Raise expectations, by all means. Require more, certainly. Do not raise those expectations or requirements so far out of reach that there is no realistic hope of attainment. All students with disabilities are not created the same. Students with mental retardation, especially those who spend 60% of their day in a separate classroom, should absolutely not be expected to meet the same requirements of their peers who have mild or no disabilities.
First, do no harm.
Author: Leslie Johnson, BS, Special Education Teacher, Swainsboro High School, 689 S. Main St., Swainsboro, GA 30401. firstname.lastname@example.org