I Before E, Then Comes a P: A Primer on IEPs

Hello readers,

For most of us, school is out for the holidays or will be soon (teachers, I can feel the “amens” coming through the screen). 🙂 I’m sure it’ll be nice not to think about school for awhile, especially the meetings and plans that might come with having a student with a disability.

However, the more you know about what goes into those plans, the better equipped you are to make sure your student gets the education to which he or she is entitled. With that in mind, we’re going to talk about IEPs today–what they are, how they work, and how they can help, not hurt, your student.

What Are IEPs?

IEP stands for Individualized Education Plan. On the surface, it’s exactly what it sounds like–an education plan tailored to a specific person with a disability so that he or she can get the most out of school and be educated alongside TAB peers as much as possible. It lists the education and services the student needs, as well as specific goals for that student, and helps measure progress toward those goals.

Now as we know, sometimes IEPs are used to stunt education, not further it. For example, if the IEP team does not make relevant and meaningful goals, it’s detrimental to the student. Sometimes teachers and administrators ignore the IEP or change it without parental consent so that they can do what’s convenient for them. Ideally though, IEPs are meant to be a helpful tool, so we’ll focus mostly on that today.

What Goes in an IEP?

How exactly does one write an IEP? Well, that’s up to the IEP team–the student’s parent (s) or guardian (s), plus school personnel. However, there are a few key components that must be in an IEP so it meets federal requirements.

-A statement of the student’s academic and functional performance. This is often made after formal assessments, but remember, formal assessments are not the be all, end all. Parents, you know your student. If an expert tells you he or she will never function above a third-grade level, fine. But you should also apprise the IEP team of strengths and real-life academic and functional capabilities. If you disagree with an assessment or a statement, it is your right to voice that and have proper changes made.

-A statement of the education and services the student needs. This can be anything from special education (hopefully in an inclusive environment) to learning aids like a sign language interpreter for someone who’s deaf. Again, it is the parent or guardian’s right to seek and insist on services even if the school balks.

-Statements of modifications to the school’s educational program (for example: the school will provide Gabby with age-appropriate modified PE, the teacher will reduce Hakim’s math homework load due to dyscalculia).

-If the student cannot participate in a “regular” formal assessment such as a standardized test: Statement of why this is the case and the assessment the student will take instead.

-Statement of when, how, and how much the student will participate in school with TAB peers (remember, IDEA states that by law, the least restrictive environment must be used at all times).

-Measurable annual goals (see below) and statement of progress toward those goals.

What is an IEP Goal–And What Isn’t?

I had an IEP in school, and I’ve even written a mock one for university classes. Goals are often where the IEP team runs afoul of IDEA and lowers the bar too much. Often, IEP goals look like this:

“Sammy will understand the basics of multiplication.”

TWEET! That’s my whistle. That’s not a goal, because it’s not measurable. Is Sammy expected to perform on grade level? With what percent accuracy? When will we know he “understands?” Right–you can guess, but you can’t really know.

How about this one?

“Ivy will improve her behavior in physical and occupational therapy.”

TWEET! How? By what measure? And, why is Ivy “misbehaving?” Is she really being noncompliant and stubborn or is there a reason she’s unhappy? Does she really need this therapy–and if the team says she does, can we make it better and easier/more enjoyable for her?

One more:

“Manuel will complete X number of geometry problems, with X percent accuracy, 3 out of 5 times.”

This is often what’s considered an acceptable goal. It’s measurable, and it gives Manuel a reasonable standard to work toward. However, remember that even these goals have pitfalls. For example, if Manuel is visually impaired, such that he only completes half those problems, yet is able to verbalize and prove on a reduced-load test that he understands geometry, maybe the goal needs to be modified.

Here’s a bonus:

“Delaney will read a fourth grade level book with 90% accuracy, recognizing and correctly defining X number of vocabulary words 70% of the time.”

Again, okay as far as the numbers go. But if Delaney is never allowed to choose her own reading material, or if fourth grade level is actually below where she is chronologically and academically, the goal is not relevant. If Delaney has no say–if any student has no say–the goal is also not meaningful. Now, I’m not saying that if Molly really needs to learn to tie her shoes, she should refuse to do it. But the IEP team’s real focus should be, “What skills or goals will help Molly in the real world? Will tying shoes help her get a job? Should we expect that of her when her fingers are so stiff from CP, and when every other student in this blinking school wears loafers?”

Final Tips for Making the IEP and its Team–And Your Student–Successful

  1. If it’s written, is it done? If your student was promised certain modifications, services, and etc., it is to be done by federal law. Period, end of discussion.
  2. Know your student’s rights. Your student can not be educated in a special ed classroom all day if it is not the least restrictive environment. The IEP team cannot make goals that over- or underestimate his or her abilities and then enact them, or change the IEP, without parental or guardian consent. If you disagree with what the school is doing, you can fight it. Familiarize yourself with disability law; get assistance where needed.
  3. Make sure the IEP team includes people that know your student’s strengths and abilities. A general education teacher was always on my team, and it was nothing short of a relief to have that person there, because I knew that the disability service workers, therapists, whoever, mainly talked about what was “wrong” with me. Whether it’s a teacher, a therapist, a relative, whoever–get that person involved.
  4. Know that you, the parent or guardian, are the one with the power. Don’t misuse it. You are your student’s voice.
  5. When your student reaches majority: Apprise him or her of rights, and help prepare for the first IEP meeting where he or she will have a lot more say and pull. Reassure him or her that you’re still there, but for backup.



Let’s Get Needy: What PWDs Need From Us

Hello again readers,

Since you waited in vain all November for a post, I’m going to give you another one, six days early. The credit for the idea goes to Kathie Snow and her article “#1 Need,” as well as a new article from Disability Scoop.

The Disability Scoop article made me so mad my chest did that clenching, heartburn thing. It was about how adults with disabilities need intimacy in their lives, but seldom find it. This can happen for a number of reasons, but the author cited a particular one: supervision. As in, a 21-year-old adult with Down Syndrome has to sneak off to a “secret place” to have a date, because the group home staff does not approve. In order for any resident to go out on a date, a particular group home in Minnesota requires that they sign out and be chaperoned.

In light of this, and in light of the sheltered workshops in Fairbault, MN I posted about last month, I have to ask Minnesota something.

What are you doing? What the Actual. Freaking. FRENCH are you doing?

I guess the people who “serve” PWDs in places like Fairbault, think they’re doing the right thing because in their minds, PWDs need to be supervised. Well, that got me thinking. What is the difference between what we think persons with disabilities need, and what they really need? I’m going to list a few examples now.

Perceived Need: Safety

When most kids ask their parents what Mom and Dad want them to be when they grow up, Mom and Dad will say, “I just want you to be happy.” I didn’t hear that. I have great parents, but they didn’t tell me that. They said, “I/we want you to be safe.”

Now, I get that. I really do. Living with a disability can be dangerous. It’s physically dangerous because so many places lack accessibility. It’s emotionally dangerous because frustration, sadness, and anger can take over your life, which can lead to self-injury, suicide attempts, and other destructive behavior. But when my parents told me that, what I heard was, “My happiness is not relevant, as long as I am in one piece and cared for.” Did they mean it like that? No, but that’s not the point.

Real Need: A Mixture of Boundaries and Independence

Every person, disability or not, needs boundaries. We need to know what we should and should not do to get along in the world and keep ourselves safe. As children, we need adults to enforce that safety. Some PWDs may need help to stay safe even as adults, and that’s okay. However, safety means nothing if the PWD basically lives in a bubble. For example, yes, a teenager who uses braces or a wheelchair needs modifications to be safe in PE class, but sending him out in the hall to hit a ball off a cone while the other kids play baseball won’t do him a bit of good. Allowing him to use gym equipment by himself, or engage in modified sports, will.

Perceived Need: Supervision

This is where I usually hear the argument that, “Some people with disabilities won’t do what you ask unless supervised.” Again, okay, I get it. Sometimes supervision is needed for everyone’s safety and sanity. Yet, this argument has holes. It places a terrible burden on the PWD to be perpetually compliant, and paints them as ill-behaved children. It also allows TAB people, like parents or group home supervisors, to hone in where they shouldn’t. (And then they act shocked when the PWD “rebels.”)

Real Need: Space

Whether you’re an extrovert or, like yours truly, an introvert, we all need space of our own. That can mean a physical space, like one’s own room, or emotional and personal space. In other words, TAB population, stop chaperoning PWDs’ dates. Stop pushing yourself into their physical space in the name of therapy. Stop yanking and jerking on their arms and legs, expecting them to do every activity the group is doing because “this is a group home,” and pressuring them to talk about things they don’t want to.

Perceived Need: Care

We spend a lot, and I mean a lot, of time, effort, and money trying to care for PWDs. This can take the form of therapies, doctor appointments, surgeries, group homes, sheltered workshops, and more. We often see these things as benevolent, and sometimes they are. However, the PWD who is being cared for is not necessarily happy. He or she may feel loved, but lonely. Safe, but unwanted. Content, but confused.

Real Need: Companionship and Intimacy

God said, “It is not good for man (or woman) to be alone,” and he was right. Just imagine how you would feel if you spent most of your days alone, or if most of your human interaction came from being cared for or shuttled to appointments. You’d feel depressed, frustrated, and unwanted. Yet, this is how a lot of PWDs live, even the high-functioning ones. In fact, high-functioning PWDs often face this dragon more than their severely affected counterparts because TAB people assume the disabilities are not really “there,” and act disappointed to discover otherwise. Once they make that discovery, the stop inviting PWDs into their lives because, “I don’t know what to do or not do” or “I don’t want to do or talk about what she does/likes to do or talk about.”

Give me a break, folks. Give me a great big Texas-sized BREAK. We all need friends–real friends, not caregivers. Most of us want significant others and we should have the opportunity to meet them. Of course, you may not be able to go out and get your loved one with a disability a date–and we don’t want you to. What we’re asking you to do is, give us a chance. Get to know us. Stop saying “I don’t get it” and spend time with us until you get it!

This Christmas, your loved one with a disability may need some new things. Beyond socks, underwear, books, toys, and sweets, think about what those are and what you can do to fill them.

A Big Fat Injustice: Examining the Lives and Treatment of Obese Persons

Hello, readers,

Sometimes, it happens that I simply run out of ideas for this blog or am not sure how to order a batch of new posts. The second issue came up this time. I’ve been wanting to write about the lives of obese people and how I think they should be improved, but wasn’t sure how to do so.

Sometimes though, you simply have to write what is in your mind and heart to write. And right now, I’m going to tell you that as a society we have a big problem–and it’s not poundage.

You may wonder why on earth I am examining this topic on a blog about persons with disabilities, especially when I have said many times that obesity is not a classical disability. The answer is simple: obesity is a disabling condition, and like people with classical disabilities, the obese population is regularly marginalized, misunderstood, and told to sit down, shut up, and take society’s crap. If your obesity is tied to a condition such as Prader-Willi Syndrome, you also have the headache of knowing it is not “curable.”

Think about it. Besides people with classical disabilities (CP, MS, autism, Down’s, and so forth), people who are obese remain one of the only groups against whom we feel comfortable discriminating. Again, in this politically correct world, we’d never admit to doing that. But how many times have you opened the health section of your paper or favorite news website and seen that somebody got kicked off a plane because they were “too fat to fly?” How many times do you go out in public and see obese people ignored, especially in restaurants and clothing stores? It’s as if the wait staff thinks, “Why do they need more food” or the clothing store staff thinks, “Do they seriously believe we have something in here that fits?” It’s hateful and hurtful, and there’s no excuse for it.

The negative attitude toward obesity doesn’t even have to be that obvious. One of my favorite fiction reads is by a lady named Laura Jensen Walker. It’s called Miss Invisible, about a woman named Fredericka who has been large her whole life. She describes the fact that she picks at food in public and never eats dessert because she knows other diners are staring at her and thinking or even saying, “No wonder she’s so fat–look at her eating that cheesecake.” I have never been an obese person, but as someone whose weight has yo-yoed for years, I can amen this situation, especially in my larger periods. I can feel very self-conscious eating certain foods in public, especially desserts and fried foods.

Fredericka also describes certain “fat girl rules” she has grown up with or embraced in order to make people look past her weight. For example, lean, never stand straight. Do not wear white pants. Do not sit in a conspicuous chair in public.

Sad, right? Actually, let’s take it one step further. Does that make you angry? It does for me, especially knowing that there are people who feel like this in real life. In fact, I’ve heard of obese or even slightly overweight people equating their looks with stupidity or laziness, often because others buy those stereotypes. I know too, because I’ve done it to the person in my own mirror. That’s often the hardest person to defeat, but you must make the effort in order to find inner satisfaction.

Now, am I saying it’s good to be obese? I will approach this gently–if you can do something about it, then for your own health and peace of mind, you should. But weight is never an excuse to ignore or mistreat another person, and some people can be in double-digit sizes and be perfectly healthy. What is right for you will be a combination of your own preferences, your doctor’s recommendations, and what makes you happy.

People with disabilities are often vulnerable to judgmental, unsympathetic people, but so are people without them. Anybody can be a target, but if your differences are visible from the outside, you may have more experience than most with this. It can happen whether you’re obese or too thin (we’ll deal with that in a post down the road). But again, you do not deserve to be a target. You are a beautiful person with a purpose. So go forth, enjoy your Thanksgiving leftovers, and encourage people of all kinds to join you at life’s table.