IEP meetings, especially your first one, can be extremely daunting and intimidating, so I wanted to share some of the best advice I got from other parents before going to my first one. I remind myself of these pointers every time I have another IEP meeting. BTW - I'm still a novice at these - I've only had two so far and I'm preparing for my third which will be my transition to Kindergarten IEP. Yikes!
Disclaimer alert: I'm not an attorney or an advocate, and everything below is based on my experiences as just a mom who learned from a bunch of other moms and took a few notes along the way.
Before the meeting:
- Request a copy of all assessments to be sent to you a week before the meeting. This gave me time to read through them, make notes, and get second opinions from other people and professionals who know my son. Then, when they walked through each assessment at the beginning of the meeting, I was able to ask questions and point out areas I disagreed with. That helps to level-set the room before we start writing goals and discussing services. If any of the assessments are completely wrong, you can request an IEE (individual educational evaluation) which is a third-party private assessment that they school district has to pay for. Or you could always pay for your own assessments from the specialists you trust and bring them to the IEP meeting.
- Request an FBA (functional behavioral assessment) if you are going to be requesting any behavioral services like an aide or ABA. I didn't even know what an FBA was, and wasn't offered one when they had me sign permission for them to do the other assessments (psych, OT, speech). Apparently, you have to know to ask for one. It can take several weeks to be completed, so make sure you ask for it well in advance of your IEP meeting, or you'll need to reconvene again after it's done.
- Record the meeting. Notify the IEP team (or person coordinating the meeting) in writing that you will be recording the meeting. You're supposed to give them a week's notice. I use the voice memo app on my iPhone.
- Bring someone with you. A spouse/sister/mother/friend. Anyone who knows your child well, but most importantly, someone who can be there for you. A good cop to your bad cop, or vice versa. It can feel like you're being ganged up on in those meetings and it helps to feel like you have someone in your corner. You just need to have your IEP coordinator add them to the list of attendees prior to the meeting.
- Remember that YOU are as much a member of the IEP team as everyone else in that room. In fact, YOU know your child better than any of the "professionals" who have observed your child over the span of a few days or weeks. Therefore YOU have a voice in what goes into his IEP, his goals and his services.
- Bring a photo of your child. I put a big picture of my son on the cover of my binder where I keep all his assessments and paper work. It's a good reminder for everyone in the room, especially you, what you're all there for. It can be a long (mine have been around 4 hours each so far) ordeal and if you're like me, seeing a picture of your child can give you strength.
- Bring a snack. Like I mentioned above, my meetings tend to run long and I was so glad I had some almonds and a water in my giant purse ;-)
- Ask questions. If you don't know an acronym or a term, ask what it means and write it down. Don't be afraid that you'll look like you don't know - it's better to learn as you go than not to learn it at all.
- Speak the language. You may find yourself wanting to say things like "what's best for my child is.." but they aren't there to do what's best. Sad but true. They're there to do what's "appropriate" for your child. FAPE is the legal term that guides a lot of the IEP discussion - it's your child's legal right to a Free and Appropriate Public Education. So say things like "that placement isn't appropriate for my child because..." Also, keep all your comments specific to your child's behavior at school, and relative to how he accesses (or can't access) his education. Don't tell them that he tantrums at bedtime, tell them that he tantrums when asked to do non-preferred tasks in school which prevents him from participating in classroom activities. Oh - and if your child does anything like head-banging, hitting, biting, darting away from you into traffic, make sure to include that. Any safety-related behaviors are sure to get addressed since the schools don't want to be liable. "Self-injurious behavior" or "physical aggression towards others" are good terms to use if they apply to your child.
- Focus on the negative. I know it sounds harsh, but keep the conversation focused on the limitations and needs of your child that this IEP team is here to address. Don't let them tell you "he's just shy" or get you going about how great it is that he knows his ABCs. The only time you need to talk about what he CAN do is when establishing baseline for writing the goals. You know all the wonderful things your child can do, but save that for cocktails afterward with a friend.
- Take breaks. Don't let them rush you through anything. If you're getting confused, overwhelmed, or if you're arguing over a service or a goal and not getting anywhere - take a break. For example, I was asking for more hours for a certain service (OT I think) and they were making excuses and dragging their feet. I stated why we needed more hours, citing his assessment and some of the challenges he has in the classroom, then promptly excused myself for a bathroom break. I went and played solitaire on my phone for about 5 minutes in the faculty restroom, and when I returned they offered me more hours. Another time, I took a break because I didn't want them to see me cry. Point is, you can take as many breaks as you need!!! You're in control.
- Bring your list of goals and make sure they are all addressed in the IEP. They will probably have a short list of goals and try to move on, but if you have some that weren't covered by theirs, stop and go back. Services are based on goals, so if you don't get all the goals in there, it may be difficult to get certain services. For example, my IEP team had no social skills goals. I had them add goals like social greetings, initiating conversation with peers, and conflict resolution. If these weren't in there, I wouldn't have any basis for needing an aide. If you need help writing goals, click here for a really good resource I recently came across.
- Remember that the IEP team members are in special education for a reason. Even though they may seem like the enemy, and might not be "authorized" to offer the services your child needs at the time of the IEP meeting, they're not necessarily bad people. They sure didn't get into special education for the fabulous salary and posh benefits, so try to remember that deep down they really want to help you and your child.
- The IEP meeting is not the end. If you don't get all the services you want during the meeting, there's always mediation, due process and even litigation if it comes to that. Do your best to get what you can agreed to during the meeting, but don't feel like you failed if you walk out of there in a stalemate on something like OT or Speech. With all the budget cuts lately, the districts make it a habit to offer very little up front. They're banking on 90% of the families accepting what they're offered in the IEP meeting. But in a great many cases, those families are entitled to more under the law and can get it by going to mediation or due process. I look at the IEP meeting as being the opening to the negotiations. Once they learn that you'll fight for what your child needs, it may get easier over time.
- DON'T SIGN ANYTHING during the meeting except for the piece of paper that says you attended. Take it home, read it, have others read it. Have an attorney or an advocate read it too if you're so inclined. You can take as long as you need - a week, two weeks, up to you.
- The IEP document is like a Chinese Menu. You don't have to accept everything offered. For example, if they offer you a placement in a program that is not appropriate for your child you can decline the placement but still accept the OT and Speech services if you want. Services and placements are separate. I think you can even partially accept a service, like if they offered 4 hours of OT a month but you think he needs 16, you can accept the 4 hours for now to get services started while you have a second evaluation done - I haven't done this so you may want to consult an advocate or attorney to see how you can do something like this.
- You can call another IEP meeting whenever you want. If something changes, a new behavioral issue arises, a service ends (like OT hours run out but you think he needs more), you can request to reconvene the team and re-evaluate. You aren't limited to the annual IEP meeting.
- NPA - non-public agency. If the district can't provide a service for whatever reason - not enough staff, not qualified, not enough room in a class, they have to pay for an NPA to provide that service. ABA is a service that many people used to get as NPA service, but I've heard it's getting harder and harder to get the districts to fund NPA services.
- IDEA - Individuals with Disabilities Education Act
- FAPE - Free and Appropriate Public Education
- FBA - functional behavioral assessment
- IEE - Individual educational evaluation
- Stay-Put - this goes into effect if you had a service and now they want to remove it. For example, if you had 4 hrs of OT a month from a previous IEP, and now they want to remove it, under Stay-Put you can continue that service while you go to mediation or due process so your kid isn't left without services while the grown-ups duke it out.
So my parting words to parents who are preparing for their first IEP: YOU CAN DO THIS. Just like everything else we do for our kids, it's no fun but we can totally handle it. Be calm, confident, and take your time. Do your best and just get through it. And lastly, make sure you have childcare scheduled for a couple hours extra - so you can go have a cocktail or pedicure or something to reward yourself after :-D
|photo of Michael on my binder cover for my last IEP meeting.|