My Autism Insights

I found out earlier this week that an IEP (Individualized Educational Program) meeting had been scheduled for today and I was expected to be there.  Short notice aside, it occurred to me that since these meetings can happen at any time, today is as good a day as any to post some advice for getting through one of these joyous occasions.  And just to add a caveat, while I am by no means the Great and Powerful Oz of IEP meetings, I have been doing them for roughly five years, so I do know a little of what I write.  However, things will differ a bit from state to state and district to district.

What is this meeting for?

The IEP meeting is usually done when a student with special needs is coming into a school district, or at the end of a school year to review whether or not the student will require services for the following year.  If something comes up during the course of the year, a meeting can be called in order to make changes to the child’s plan.  My meeting today had to do with starting the process of getting physical therapy added to Gus’s program and also reviewing a request for a 1:1 aide.

Who will be there?

This can be the most daunting part of IEP meetings.  I remember the meeting we had just before Gus transitioned into Kindergarten.  There must have been about 15 people in the room - most of whom I had never seen before!  There can be any combination of teachers, assorted therapists, psychologists, administrators, committee chairs…there are lots of people, and you.  It’s probably more comfortable to walk out onto the pitcher’s mound at Yankee Stadium in your underwear, but it doesn’t have to be so threatening.  First, if both parents can be present at the meeting, it makes a BIG difference (unless the parents are at odds).  If not, bring someone with you - a family member, a friend, sometimes you may want an advocate or attorney if you anticipate that you may have serious trouble getting your child’s needs met.  It’s important to remember that regardless of how badly outnumbered you are, it’s essentially your meeting.  And you can have whomever you want in attendance.

This brings up another point.  Sometimes, the people you want at your meeting may not have been invited by the district, and you’ll have to invite them yourself.  I learned this one year when Gus’s speech therapist sent a report saying she wanted to remove speech therapy.  I had to go find her and find out why she would recommend that (she thought the district would deny it) and then make her case for her.  Why?  Because I hadn’t invited her and no one told me that I had to invite her.  So, if there is a therapist or counselor you want in attendance, write a letter to the district in advance and tell them exactly who you would like to see there.  Then let that person know yourself.

In my home state of NY, each CSE (Committee for Special Education) is supposed to have a parent representative, and that person (often volunteers) is supposed to be at the CSE meeting as well.  In five years, I have never once seen this person and I am usually asked to sign a waiver so that the meeting can continue without the rep.  Just be aware, that you might have the right to have another parent who has navigated the system present and you might be able to postpone the meeting, although that might be shooting yourself in the foot.

Be prepared!

I may sound here like I’m recommending that you prepare as if you are getting ready for a major battle.  Well, you kind of are.  We’d like to think that everyone is going to have our child’s needs in mind, and while that’s partially true, everyone present in that meeting will also have their own agenda and their own restrictions.  School districts have federal, state and budgetary restrictions and they have to consider all the other children vying for the same limited resources as your child is.  Teachers and therapists get stuck in the middle trying to please parents and districts, and if they care at all for your child, they’re trying to do what’s best for him as well.  You are strictly concerned with your child’s needs.  Many times, the balance of power will shift because that middle group is like a group of swing voters.  My strategy has usually been to try as much as possible to have a strong partnership with Gus’s teachers.  Then when we walk into the meetings (I make sure all his related service providers are present), we can present a united front.  The strategy has served me well several times.

What if you are in conflict with the school staff, or even worse, in conflict with the district AND the school staff? Make sure you know exactly what your rights are, and you’d probably do well to have an advocate.  The last thing you want is to get railroaded, and as much as I hate to say it, I’ve seen it happen to people.

Two resources that may be helpful are the U.S. Department of Education’s Individuals with Disabilities Education Act website.  You might also contact the department of education for your state, and they will probably have some kind of pamphlet about your rights as the parent of a special needs child.

Once you know what your rights are and where everyone stands, you’ll also want to have a clear idea of what options are available to your child.  What programs are out there?  What services are you interested in?  There’s no guarantee you’ll get everything you ask for, but if you don’t even know what to ask for, you’re at a great disadvantage.

Now, some districts can be funny about letting parents look at programs before the IEP meeting.  I think this is insane, tantamount to asking someone to sit down to a real estate closing without ever seeing the house they’re buying.  Our old district had such a policy.  I ignored it.  The chairperson was very displeased with the fact that I came into the meeting with a program in mind for my child (she was more upset with the school reps than with me) but eventually, we got him into the school.  Don’t do it lightly because you don’t want to be overly antagonistic, but sometimes you may decide that bending the rules is necessary.  You’d get no arguments from me.

There’s an awful lot more to cover on this subject, but this should at least get you started on your road to preparing for an IEP meeting.  If any of my readers can think of any questions or aspects of the process that I should cover more in depth, I’m completely open to your thoughts.

By the way, our meeting today went better than expected.  Gus will probably be approved for PT, but has so far been denied for a 1:1 aide.  But the district has suggested that a behavioral specialist evaluate the environment to see what may be triggering some of the issues he’s having.  While that may not work in our favor, I’m still optimistic at this point.  Oh, and one more point:

Be flexible!

You have to know when to stand your ground in an IEP meeting, like when the district is trying to cut services to your child that you know are clearly needed.  But sometimes, the district might come up with an alternative that you hadn’t considered, and they’re not always wrong.  So go into your meeting with confidence, and know what your agenda is, but then be open to other ideas.  You don’t have to make any decisions on the spot, so there’s no harm in listening and giving every suggestion fair consideration.

Have a great weekend, and please leave a comment if I can answer any specific questions!