It’s a Gift and a Curse: The 411 on the IEP (and other Examples of Alphabet Soup)

Hello again, readers,

“It’s a gift and a curse.” This is the way my favorite detective Adrian Monk describes his abilities, and I get that. On the one hand, the guy is brilliant, but on the other, attention to all that detail means there’re plenty of opportunities for his OCD to come out to play. Then again, if he didn’t have OCD, would he be quite that brilliant? I’m not sure and I don’t think those around him are, either. Funnily enough, that’s kind of the way we think about Individualized Education Plans too, isn’t it? On the one hand, these documents are supposed to make it easier for our children and young adults with disabilities to get the educations and school experiences they deserve. But on the other, IEPs often come packed with problems that almost no one seems prepared to solve. So the question I want to tackle today is: is having an IEP worth it? Are you breaking the law by not having one, or worse, ensuring your child will not have a decent future? And, if your IEP experience so far has been negative, are there ways to change it? I know, more than one question, but we will address them all in some way here.

First off, let’s get out of order and answer the second question (Forgive me, Mr. Monk). As far as I know, it is not against the law to refuse an IEP for your child or young adult. Nor is it against the law to refuse an IHP (Individualized Habitation Plan) IFSP (Individualized Family Service Plan) or any other such Plan in America. The problem with that is, too often, the “experts” will tell you that your child needs these plans to have a level playing field at school, at work, in the world.

Are they right? Well, you guys know how I feel about “experts” and their predictions, many of which are claptrap. But having had an IEP myself, and having seen it make my school life less painful for twelve years, I’m willing to give the experts some latitude. It is still my hope and my goal that over time, we as a society will move toward an inclusive model of how we treat persons with disabilities so that written plans might become less of a big deal. For now, though, the sad truth is that some people don’t want to lift a finger to help PWDs or make them feel worthwhile unless they’re being policed by federal laws and paperwork. Some people also ignore the paperwork, but we’ll get to that in a minute. The majority of people want to help, but the IEP is often a safeguard against those who don’t.

Individualized Education Plans or other plans are also helpful because they can spell out the exact effects of a disability, especially those that are not readily seen. For example, I can’t tell you how many times baffled teachers asked, or even demanded, “How come she can’t see and manipulate math problems if she can read? She’s just trying to get out of work to read books.” No, no, no–as the IEP spelled out for them and for others. I have no depth perception and no peripheral vision, and even though I’m not sure how this works, I only see out of one eye at a time. So, for example, I could be looking straight at you, and seeing you just fine. But because all my focus is on you, I might not see the plant behind you that you’re so anxious for me to admire. By the way, I’m certain it’s a lovely plant.

That eye problem wasn’t visible to the casual observer, snark, snark. But having an IEP made it easier not only to explain that issue to teachers (once I was old enough to do so) but also say, “Look, by law, you need to help me with this issue by modifying your activities in A, B, and C ways.” And although I sometimes felt like a shrew for doing that, my parents and others have drilled it into me that asking for help when you need it is not a crime. Actually, that’s something I bet a lot of PWDs struggle with for various reasons. Note to the temporarily able-bodied world: asking for help does not equal “helpless,” “shiftless,” “lazy,” or “manipulative,” so if you think it does, get over yourselves.

The IEP or similar plan can work the other way, too. For example, let’s say that your child, we’ll call her Vianne, has severe disabilities. She uses a wheelchair and does not communicate with her mouth. Her motor control may not be good. Therefore, it would be criminally easy for the adults in her life to label her as uneducable and totally sideline her from activities. But if her IEP spells out the fact that Vianne can communicate via computer or other assistive technology device, and needs one to do so, then the school is obligated to provide that for her or to allow her to bring in a device she already uses. Note on that: if the school balks, hold your ground. “We’ve never done that/it’s not our job,” is not an excuse.

And on that note, let’s touch on the negative of IEPs, IHPs, and all the other Ps. The first, as you might guess, is that some people, and by “people” I mean teachers, principals, therapists, whoever–just don’t give a flying flip. I have seen and heard of these people conveniently ignoring plan directives or “rewriting” the plan once the child or young adult is in their domain. And then the PWD suffers for it. That’s often because the guilty party feels it’s not his or her job to follow the plan, he or she is above the rules (and in this case, federal law), or that a student with a disability is a total drain on his or her work. One word: wrong! That’s a sorry attitude, and none of those excuses hold water. Let’s just get that out in the open right now.

The same is true for people who “rewrite” the plan behind the PWD and his or her loved ones’ backs. What do I mean by that? For example, I mean the teacher who sees in the IEP that Michael, who has dyslexia, needs to have his reading assignments recorded 100% of the time, but skimps, saying that Michael can have recordings 50% of the time in her room, but otherwise needs to learn to read “like the other kids.” I mean the group home staffer who sees in an IHP that Sarah, who has severe Fragile X, needs social interaction and loves being around people, but withholds social activities from Sarah when she has supposedly been noncompliant or not met a goal. It doesn’t even need to be that obvious. I’m also describing, say, the physical therapist who sees in the plan that Taneisha needs therapy three times a week, but without parental consent, scales back the sessions. If Taneisha has improved so that she only need 1-2 sessions, great, but you do not change an IEP without parental/guardian consent. Period.

IEPs can have a plethora of other problems as well. Some of these go under the big umbrella of what I’ve already described, and some have places in future posts. So for now, I’ll just give you a list:

  • Alphabet Soup. Kathie Snow describes this in her heartbreaking article, “Annie in Disabilityland,” written from the point of view of a young girl whose entire life changes when she’s diagnosed with disabilities. Annie describes it as being in a land where everybody spells everything–IEP, OT, PT, VR, “and something about an idea and a lady named Ada.” Yes, I understand the need for acronyms, if for no other reason than to save breath. But the problem is that often, the “experts” use these acronyms to, consciously or not, make those outside the Disability Land circle feel lost and the PWD feel incompetent. These clusters of letters are also often used to reduce a person to a mere diagnosis and set of problems and plans. As St. James put it, “My friends, this should not be.”
  • Arbitrary, Irrelevant Goals that are Used as Discipline Methods. We’ve discussed this before–you know, those goals that say stuff like, “Laura will wash her dishes within twenty minutes of eating”–when people without disabilities don’t do that themselves? Right. We may have discussed it, but the wrongness of that construct bears repeating. It’s also not appropriate to use the meeting, or not meeting, of goals as a measuring stick by which you discipline a person with a disability, particularly a young adult or adult. As in, “Victoria hasn’t met her goal, so no, she can’t leave the group home this weekend.” What a crock. Besides which, I don’t even like the way that goals are stated in IEPs. “Rose will do X,” “Eli will do Y,” with 95% accuracy 3 out of 4 times. Well, first of all, especially if they’re young adults or adults, who are you to say what Rose or Eli will or will not do? Besides which, you’re the one who set the accuracy standard, and you probably don’t know what it takes to reach those goals because you’ve never had to.
  • The “Plan” Being Set Up as a Demi-God. As in, acting as though because something is written in an IEP, IHP, or wherever else, it can never be changed, even if the person with a disability and his or her needs and desires have changed. Which brings me to:
  • Once Doing so is Age-Appropriate, Giving the PWD No Input. Self-explanatory.

So, to wrap up: is having an IEP worth it? Well, it can be. That depends upon your individual IEP experience (see what I did there)? 🙂 If, for example, the people in your loved one’s life constantly do things on the above list, or you don’t think an IEP is best for your child, then that’s one matter. Your opinion should be respected. If your experience has been positive, you may feel differently. But remember this: no matter what, an IEP is no excuse to forget that a PWD is first and foremost a person.

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2 thoughts on “It’s a Gift and a Curse: The 411 on the IEP (and other Examples of Alphabet Soup)

  1. Glad I could help! As a bonus, here’s some more basic info:
    IEP = Individualized Education Plan–Plan written for a school-age person with a disability, ages 5-17, which details the disability, the modifications required to make sure that person can learn well in a classroom setting, and any goals related to the school environment (for example, reading goals if the child has dyslexia). Once the child reaches 14-16–different ages in some areas–he or she can attend the IEP meetings and have input into what goes in the IEP. An IEP team should consist of a special education representative, a general education representative, a parent/guardian, and anyone the parent/guardian deems necessary for the meetings. For example, my occupational therapist usually came because we were very close.
    IFSP = Individual Family Service Plan–Plan written for a young child with a disability, infant-preschool age. These are usually the results of early intervention services and also include modifications and goals. The family is heavily involved; meetings about this plan may take place in the child’s home. Therapists, preschool teachers, and others may be involved as well.
    IHP = Individualized Habitation Plan–Plan written for an adult with a disability, 18+, which usually details “transition services” and goals related to living independently. I’ve never been on one of these, thank goodness, because they’re the ones I like the least. From what I have read, the IHP is the one most often used wrongly (“Drew will make his bed within 10 minutes of getting up” when nobody on earth probably does that, as well as using the goals to say to Drew, “Do this or you will not be allowed to live independently/go where you want/do what you want.”)

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