I can't tell you how many times parents spend wasted energy fighting over the label that is used for their child. Then again, I can't tell you how many times I have spent my time and energy fighting for a specific label (or against another) because the label selection was the key to get the child what he needed.
So, here is my bent on labels. A label is only necessary to get you something you need.
Labels are the compilation of the alphabet soup that makes up the life of special education professionals. HFA, ADHD, OHI, MMR are not just acronyms – they are significant labels that can make a difference in a child's life… sometimes. Other times… not so much.
For a 4 year HFA kid, an ADHD label may not be necessary. HFA gets you everything you need. Right? Maybe… maybe not.
Are you with me yet? Need some more explanation?
Schools determine ELIGIBILITY which is based on certain categories authorized by the feds and the state. The two relevant eligibility categories for our discussion here are "autistic like characteristics" (for students with autism or Aspergers or HFA) and "OHI" - which stands for "Other Health Impaired" - (for students with ADHD or Anxiety type issues). Once a student is eligible under ANY category, then what the student GETS is supposed to be based on what the student NEEDS. You identify needs by other assessments, such as language, fine motor, academic, etc. You then identify the needs in the "present levels" of the IEP document you are writing and then write goals and then figure out services.
Everything in the school district is supposed to be based on NEEDS. The evaluations are to determine NEEDS. The eligibility labels that districts assign are just supposed to make you "eligible" to receive services; what you need is then dictated by the IEP. So, technically, once you are eligible, the label should mean nothing. Right?
Unfortunately, sometimes it does.
In Arizona, the state actually gives school districts extra money for students with disabilities. The amount of money depends upon the disability. Some disabilities simply cost more. Autism is one of the "expensive" disabilities. The state of Arizona provides significant dollars to schools districts for each autistic child. The label, then, benefits both the school district and the parent. How does it benefit the parent? Well, obviously, if the school district gets adequate funding for your child, getting more services should be an easier fight. The operative words there are "should be". It is unknown what oversight the state gives to see that the money they give for any autistic child is actually spent on that autistic child. Who knows where the money actually goes? I certainly don't. If you do the math on how much your child is costing the district, it often is significantly less than what the state is paying for your child (if he has an autism label). At one time, at least one district was creating unique programs for children with autism and accepting inter-district transfers from other districts of children on the spectrum. The state money follows the child to the new district. Can you say "profit center?"
Well, what benefit does an autism label get a parent in Arizona other than giving money to the public school to use for some kid, and maybe even your kid? Well, at present, there is a new "voucher" program (The Empowerment Scholarship) that allows eligible parents to apply to receive some portion of the money the state would otherwise pay to a district for their child. It survived the first round of legal attacks against it. Some parents have used these funds to withdraw their child all together from the public school system and privately fund home school or private school education. The amount of money available through this Empowerment Scholarship depends upon the eligibility label. If your child is eligible as a child with autism, the amount of scholarship is a lot more than if the child is only eligible as a child with OHI.
So, what about California - the state that has no money and gives no money to districts for students with autism (or any special needs for that matter)? In California, even the amount of money the state gives for "average daily attendance" and other funding is decreasing annually as the number of autistic kids is increasing. So, do labels mean anything in California?
They shouldn't. But, sometimes they do.
One place that a label makes a difference is in the placement of children. Some districts have "autism classrooms" where they group high functioning and low functioning kids together. While the class might be great for a lower functioning child, the HFA child is left behind. They are the ones who "get it" so they get less attention… until they start copying the bad behavior they witness in order to get some attention they are craving. Instruction is supposed to be individualized, right? But how many instructional groups can they create? Small group instruction is taught to the lowest common denominator. I was in a class that was "supposed" to be an autism class for children capable of learning general education standards recently. The child I was there to observe was one such child. They were singing the days of the week song, again. It was third grade. He knew all the words, went through all the motions while the three other kids present struggled to stay in their seats, with their focus someplace else.
So, having an autism label may result in your being "dumped" in an autism class which may or may not be a good thing. Similarly, if you let the district get an IQ score on your child , and the IQ is low, the district can use that IQ to "label" the student as intellectually disabled, what we used to call MMR (Mild Mental Retardation) and to then justify placement outside of an inclusion program and in a "functional skills" or "life skills" program. And, I can’t forget the case of Weissburg v. Lancaster School District, a 2010 decision from the 9th Circuit. In that case, the student had an intellectual disability and autism. The school, however, only classified the student as mentally retarded and placed the child in an MR class. California state statutes required special education teachers to have credentials specific to the child’s primary disability. The court held for the parent in that case, finding that the district had erred by not finding the student eligible in BOTH categories; “The new classification entitled student to placement in a classroom with a teacher qualified to teach students with primary disabilities of both mental retardation and autism. Placement is supposed to be based on needs but districts get to decide placement and claim that they can meet your child's needs in whatever class they place you. So, sometimes the disability category chosen for eligibility purposes DOES get you something in terms of placement.
And, then again, sometimes it doesn’t. In Arizona, private day schools are “approved” by the state. They apply to the state for approval and list the eligibility categories they seek to serve. If you are seeking a district funded placement to a private day school, your child must have an eligibility that will fit the school. When I first wanted my son to be placed at New Way Learning Academy in Tempe, his eligibility was ONLY OHI and, at that time, New Way was not approved for OHI. While New Way currently is OHI approved, the point here is that a label may impede your ability to go to a private day school and obtain district funding. New Way, for example, is NOT approved for autism at present. While they have some Aspergers kids who attend, they are PRIVATELY placed, and New Way has insured that their staff can meet their needs. BUT, if you are seeking district placement for a child whose primary disability eligibility is autism, you will NOT be able to place the child at New Way.
So, where else might a label make a difference? I started this post with the example of the HFA child who may also have ADHD and queried… what more does the ADHD get you? Do you need to insist that the district add the designated label for your ADHD child (which, in special education label-lingo is OHI, standing for "other health impaired"). Does HFA get you what you need?
Well, maybe a label helps if you are really high functioning HFA. Take for example one student I recently helped. He is in high school, gets straight A's, takes AP classes, and is obviously HFA. He doesn't get "specialized academic instruction" in the resource room because he doesn't need it. He gets some behavioral services after school and some accommodations. His accommodations, however, are due to his intense anxiety. He can't function if there is a clock on him. So, for his tests, he takes them with his class but then stays in during lunch or after school to get extra time. No big deal, right?
Except when it came to applying for the College Board (SAT) and seeking accommodations. They saw HFA and turned him down for all accommodations. He appealed with letters from doctors, and his teachers explaining how his disability manifested and they said "no". His parents had to file a discrimination complaint with the Office of Civil Rights which took months to resolve and by then, he had already taken his first AP tests and did not get the 4 or 5 he would need to get college credit.
His IEP team gave him what he needed but didn't document it well enough on his IEP. Had he also had an OHI label for his anxiety, and had his present levels demonstrated how his anxiety affected his learning and what they were doing to address them, the new rules for the College Board may well have resulted in his getting the accommodations the first time around.
So, while labels are just words and students needs are supposed to dictate services and placement, sometimes that is not necessarily the case. Labels are only important if the one chosen helps YOU get what YOUR child needs. The key is for YOU to know what your child needs in order to help insure that any label chosen will not inhibit you in obtaining services for your child.
November 1, 2013
IQ Testing: Should I Say No?
January 11, 2012
What's in a Label? When a Rose By Any Other Name May Not Be a Rose.