Planning for your first IEP

You’ve already received a diagnosis for your child.

You’ve already learned that early intensive behavioral intervention is the best treatment for your child.

Now, without giving you time to address the personal, emotional, philosophical, and financial problems that come into your lives after those first two critical steps, you start hearing about this IEP thing. Very quickly, reading the Mosaic list or any of a dozen message boards, including [especially?] those populated by lawyers and advocates, you’d think that you’d uncovered the real death panels in our health care system.

But IEP meetings don’t have to be as paralysis-inducing as people often make them out to be. They are both more, and less, than you think. With a little bit of knowledge, you can dramatically improve your entrée into this next phase of special education. Learning to understand the IEP process is important because this system governs special education services for children from ages 3 to 21. And believe me, even if your child fully recovers and is out of the system in five years, you will have friends and programs and therapists that you will want to support throughout their experiences with the system.

So, how do you learn about IEPs?

There are three sources, and they are not equal: authoritative, reliable, anecdotal.

Authoritative – the actual statutes and regulations that govern special education at the federal and state levels, as well as the court cases interpreting them.

Reliable – state and “big agency” pamphlets, booklets, and handouts. Books by well-regarded and experienced lawyers.

Anecdotal – everything on Mosaic and half the posts on COPAA; books on IEPs by unknown lawyers and non-lawyers.

(You should realize by now that this mirrors how you learn about autism.)

This introduction isn’t a tutorial on the text of IDEA or an explanation of when federal law trumps state law; that’s the equivalent of reading a PowerPoint slide to you: it’ll waste your time, bore me, and annoy you. Let’s focus instead on two things: the principles that guide the overall IEP process and some tips that will help you start this process with as much control as you can muster.

Principles

1. The IEP process is divided into four stages. It is important to understand what you and the rest of the IEP team have, and have not, agreed on so you know what type of problem you might have and what your options are.
   • Identification – does this child have a potential special education need?
   • Eligibility – should this child be further evaluated to determine needs?
   • Evaluation – what are this child’s deficits and what is required to remediate them?
   • Placement – what individualized mixture of services is necessary to give the child a “free appropriate public education?”
2. The “IEP team” is, and isn’t, a team. It’s a team in the sense that you have specific information and  procedural rights that are designed to protect your meaningful involvement and your voice at the table. It’s not a team in the  sense that neither you nor, more importantly, the school district have veto power. It’s more like a game of poker during the betting rounds where part of your job is to make sure that you create clear signals along the way that let each party know when it’s their turn to raise or fold.
3. Unfortunately, there is no end once you are in the IEP world. There’s no safe zone in which you can KNOW that things won’t change. The silver lining is that you’re never truly stuck with services that you may have agreed to at one point in the past. In other words, the district can always call an IEP meeting and propose to reduce services; you can always call a meeting and propose to increase services. It’s not exactly an even bargain, but it allows for flexibility as circumstances change.
   • If you go far into the dispute process, then you can get some of this certainty for some period of time.
   • Many districts try to schedule all IEPs around a certain time, such as May so that they can ostensibly more accurately assess the need for ESY (extended school year) services. I think that parents should regularly plan for reviewing the child’s progress after just a few weeks in September, particularly with a new placement. This timing allows parents to call for a meeting in October if the placement needs fine-tuning or more.

Tips

1. Your goal is to have a signed IEP in hand, meaning you’re reasonably happy, before your child’s third birthday.
   • My son started school on his birthday, but we were pushing and rushed. We were essentially ill-prepared because we didn’t start soon enough because our early intervention coordinator completely failed to notify the district. Of course, that district effectively ignored my wife’s midsummer calls only to complain in September that there “wasn’t time” to be ready by his third birthday. And now that doesn’t have to be you.
2. If you are in early intervention now, you should already be talking to your service coordinator about a transition plan and talking to your school district.
3. Don’t wait until the EI person tells you it’s “okay” to start talking to the district. Ask [her] to send your child’s information to the school unless you are really, really sure you’re moving. And even then, there’s no harm in being a little over-prepared.
4. If you’re not in early intervention, because you’re in an outreach program of some kind or you decided to arrange your own services rather than pay EI’s cost share (NJ-specific; NY is different), you should start talking to the district now. Today.
5. Write, write, write. (And keep copies.)
   • Write things down so that you remember them. Consider a sturdy dedicated journal that you can get at Border’s on the sale rack for under $5.
   • Write [nice] letters to the school regularly so that they get used to confirming what you discussed and agreed on. (And keep copies.)
   • Writing regularly means that no one will automatically raise the alarm, rightly or wrongly, when they get a letter from you. (And keep copies.) Good communication builds a stronger working relationship that can’t hurt anyone.
   • If you email, save it in a useful way (use a free print-to-pdf utility and save it in a special folder for your child’s papers). (That’s a way to keep copies.)
6. SMART goals – SMART stands for:
   • Specific
   • Measurable
   • Active
   • Realistic
   • Timed

   The acronym helps you develop goals and objectives for the IEP that will be useful. Poorly written goals are effectively useless – they don’t signal what should be done and they’re unenforceable as a practical matter.

   • Wrightslaw has a number of useful pages (PDF) on SMART goals.
   • I have written a post on SMART goals.
   • Learn what your role in the process is. Unless you have some special domain expertise, don’t *worry* about thinking you have to pick the actual goals for your child (that shouldn’t be your job). Instead, learn how to ask questions to find if the goals presented are the right ones. Learn how to read and rewrite them so that they are useful to have in your child’s IEP. That’s a skill any parent can learn.

Final thoughts

Find and share resources. You will meet a huge number of providers over the next few years, from doctors to dentists to lawyers to therapists to psychologists to schools to external classes and on and on. Find people you like, recommend them to others, and seek their advice when needed.

I’m working on a project to help parents do exactly those things, including interviews from various professionals so that they can teach us as parents when we should be calling them.

It’s not as simple “call the doctor if the fever is 103; go to the hospital at 104; call 911 at 105.”

If you don’t know what kind of person will address your child’s problem, ask other parents, ask your child’s case manager at the district, and ask the most senior behaviorist who supervises your child’s program.

Good luck. You’re not alone.

Notes on Resources

1. Evaluating treatments – ASAT has a description of various treatments and the research basis supporting each one.
2. Philosophical issues regarding autism treatment – self-advocacy groups such as ASAN have been vocal about these issues. It’s not as straightforward as you might think; see, e.g., this parent’s viewpoint.
3. Get an introduction to insurance coverage (not specifically dealing with pending NJ autism insurance legislation) and the insurance claims process from Christina Peck’sbook.
4. Mosaic) is a Yahoo Groups based mailing list, ostensibly for parents of 5 yo+ children on the autistic spectrum in NJ. In practice, the group is populated by a wide range of very helpful parents, with years of experience in almost every conceivable issue. Both DAN  & non-DAN folks abound, and I have not seen any judgmental comments across hundreds and hundreds of postings.
5. COPAA, the Council of Parent Attorneys and Advocates, focuses on the legal/administrative segment of the issues parents face. COPAA maintains a strictly members-only mailing list that helps parents, advocates, and attorneys identify, investigate, evaluate, and present claims and cases on behalf of those with disabilities. NB: COPAA is by no means autism-only and includes discussions about discrimination as well as special education.