I subscribe to a number of email lists on various topics related to education and twice now in the last few months the question of labels and why they matter has come up on one of these email lists.
The most recent occasion was a posting on a mailing list dedicated to special education law. A parent emailed the list to say that now, at the age of 12 and after over seven years as a special education student, her child had been diagnosed with Aspergers Syndrome, a communication disorder that falls under the umbrella of Autism Spectrum Disorder (ASD). The child had previously been diagnosed with some disorders that led to a special education label of emotionally disturbed. And the parent wanted to know why it mattered and whether she should push to have the classification changed.
One of the people who replied to her email was Carol Moore, a school psychologist in Oregon. I liked her answers (they were more thorough and systematic than my own) and, with her permission, I've quoted them here for my readers:
- The "right" classification is the accurate one. One person mentioned that the child had a chromosomal disorder that causes low cognition, motor difficulties, speech language, etc. In that case, the most appropriate classification would be Mental Retardation, since language difficulties are subsumed under that label, as would be behavioral difficulties, etc. The motor issues would still be addressed in the IEP, but that is not the primary factor affecting the student's educational performance. Other examples: a kiddo has a head injury and subsequent learning and behavior difficulty. The appropriate classification is TBI, not Mental Retardation, Emotional Disturbance, or Learning Disability; another child has a variety of medical diagnoses...let's say, ADHD, Bipolar, Tourettes, etc. The appropriate classification is Other Health Impaired.
- Too often parents and other team members would prefer to use a more palatable category, say Developmentally Delayed, when the child is clearly Mentally Retarded, to give a common example. This hurts the family by raising the expectation that the child may develop out of her difficulties, reducing community services and supports that may be available, and perhaps leading to school based services that are less appropriate.
- Categorical eligibility has an educational benefit...staff must learn about the conditions that give rise to an OHI or Autism eligibility, for example, whereas an Emotionally Disturbed or Learning Disabled student may be considered "someone else's problem," specifically, the SPED staff's vs. the regular education teacher's.
- Dollars flow through special education eligibilities via formulas that are established by the state. In my state, for example, the category of Traumatic Brain Injury is finally being added to the low incidence regional disability services, opening up the possibility of additional resources being available to students in that category. This is what happened with Autism spectrum disorder...parents advocated and the disorder became recognized and resources flowed.
- Finally, it is possible to have multiple eligibilities, if they all make sense. Some disorders "trump" or subsume others. For example, an Autistic student should not have an ED label UNLESS the emotional (and not typical behavioral manifestations of autism) component is significantly interfering and not automatically a part of the autism...perhaps depression. A child with an OHI eligibility due to ADHD should not also be labeled ED for the same reason...behavioral difficulties are part of the ADHD. Again, if something rather different were presented, say, substantial depression or anxiety, then addition of ED may be warranted.
Moore concluded with a remark I had to smile at: "If you're now confused by all this, take heart: so are all the teams I've worked with. The primary thing to bear in mind is to accurately portray the student's difficulties."
The discussion took place on the Reed Martin Special Ed Law mailing list.
Special education labels DO matter for other reasons, too. A label/placement can determine what teacher a child sees. Different special education teachers may have different certifications.
In the not too distant past I was involved in a discussion on an email list on Down Syndrome. Let me say at the start that it is a great mailing list. If you are interested in issues related to Down Syndrome, the Down Syndrome List is the place, and I highly recommend them.
That said, the discussion I'm referring to lasted a week or more and shifted between a couple of focus points, depending on who was contributing at the moment and what their exact interests were. The focuses included:
The role of IQ (and, probably more importantly, IQ testing) in determining the eligibility category of a special education student.
The importance of inclusion for mentally impaired students (something the people on the list placed a higher value on than most special education parents)
And a classification distinction my particular state makes between students who are mildly mentally impaired and those who are moderately mentally impaired.
The discussion was animated. With several people replying to several people as they checked their email, it was sometimes like being at a table where everyone was talking at once. And, to be honest, I'm not an average member of the list; I'm a teacher, while most members of the list are caregivers for a child or adult with Down Syndrome.
At times in this particular discussion I felt like I got slapped around a little. (But, like I said, it's a good list and, hey, that's okay.)
The question of the validity of IQ tests -- what they really measure and to what extent they accurately gauge intelligence -- I leave for some other day (like when I do my doctorate, or something). But, like it or not, IQ ("general intellectual functioning," in the words of the policy) is specifically used in my state's policy to determine whether a student is mentally impaired. To be classified as mentally impaired, the student has to have an IQ of less than about 70. My state goes on, following the American Medical Association's model, and classifies mentally impaired students into sub-classes for eligibility purposes:
- Mildly Mentally Impaired if their IQ falls between about 55 and about 70
- Moderately Mentally Impaired if their IQ falls between about 40 and about 55
- Severely Mentally Impaired if their IQ falls between about 25 and about 40
- Profoundly Mentally Impaired if their IQ is less than about 25
But why does it matter whether a student is classified as moderately mentally impaired or mildly mentally impaired? Because teachers get certified to work with mildly mentally impaired students or they get certified to work with moderately mentally impaired students, etc. That means that if a student is classified as moderately mentally impaired (as Down Syndrome students often are) they become the educational responsibility of someone certified in working with moderately mentally impaired students -- and in my county we don't have someone with that certification at every school.
It's possible to be certified in more than one area of mentally impaired; but I don't know anyone who is (and the academic work involved would be considerable). And if an eligibility committee decides that Johnny is moderately mentally impaired instead of mildly mentally impaired, that may ultimately affect which school Johnny attends, what his program of study looks like, whether he is required to take the same high stakes test that most of the school's students take, etc. At the very least it would mean that the student would have to attend school somewhere in the county where a teacher certified to work with moderately mentally impaired students was available - and there's no teacher like that at my school!
Why doesn't my county place a teacher certified in teaching the moderately mentally impaired at every school? They don't exist. We don't have that many teachers certified in teaching the moderately mentally impaired. There's a shortage. Just like there's a shortage in my area of math and science teachers for the middle and high school grades.
At one point some of the participants in the discussion drew the conclusion that we segregated moderately mentally impaired students in my county. Of course, that's not the case (it would be a gross violation of the student's civil rights). And while a moderately mentally impaired student that lived near my school might have to take the bus to a different elementary school so that someone properly certified would be around to be responsible for their educational experience, that school would be a perfectly normal elementary school. But I don't think some of the people in the discussion ever bought that. And, as I said above, Down Syndrome parents seem to place a higher value than most special education parents on seeing their children taught in an environment where they are with their non-disabled peers...
But as you can see, whether a child is classified as moderately mentally impaired or mildly mentally impaired could possible make a big difference in their educational experience. Labels do matter.