One of the lucky things about my first two jobs is that they provided me with some helpful training for my life as a special needs parent. In my first job, I learned how to make health insurance appeals. In my second job, I had a handful of clients in Early Intervention and dozens of clients with IEPs, so I got to learn all about how those systems work before I had to start advocating on behalf of my own child. (In fact, with Early Intervention, this led to some confusion -- when I called to get Joshua enrolled at age one month, I still had some messages pending for my clients, and the manager called back confused about whether attorney Erin and mom Erin were the same person, and in what capacity I was calling for Joshua. And her tone totally changed once she realized I was calling for my own child -- you get much friendlier treatment and much greater access when you're the parent rather than the attorney. But I digress.)
For the clients with IEPs, we sat in on their meetings, reviewed the documents, and were available to help challenge if it came to that (although with my clients I never actually did a due process hearing). So I am very comfortable with the process itself, although it feels completely different as the parent rather than as one of the service providers. It's much more emotional and stressful when the discussion involves your own kid and the areas where he is delayed. And because IEPs read in some parts like legalese and in other parts like a robot spitting out a formula, it can feel like the school district is dealing with your child mechanically rather than thoughtfully, compassionately, and individually. If I ever do go back to a job where I'm an attorney in IEP meetings, it will be invaluable to have seen what it feels like to be the parent.
In the process of attending IEP meetings, here are the best tips I've learned that apply universally:
1. You can request your papers ahead of time. This is helpful for a few reasons: it lets you read about your child's strengths and weaknesses privately and lets you feel whatever emotions that might bring without an audience; it lets you read the services and goals in a concentrated way, without having to keep half your brain tuned to what's happening in the meeting while you're trying to read; and most importantly, it lets you know any areas where there are disagreement and lets you think about how to prepare for that.
2. You are allowed to bring support people with you. Many states have non-profits with free trained advocates who will go with you. These people know the process and the paperwork and your rights backwards and forwards, and they can talk to you about what your goals are for your child and then help you fight for that. You might also bring a trusted relative or friend, even if they don't know a thing about IEPs, so that you feel emotionally supported.
3. The things to really focus on in the IEP are placement, services, accommodations, and goals.
I have re-written this paragraph three times and can't quite seem to get it right - there's too much to say and it's too specific to individual situations. But here are 3 places where you might need to prepare for disagreement: 1) whether your child qualifies for an IEP in the first place; 2) what is the least restrictive and most appropriate placement for your child (particularly if there are behavioral issues that negatively impact the other students in the classroom); and 3) getting a really expensive service in place (like one-on-one nursing care). (It's beyond the scope of this blog post, and for that matter my "expertise", to go into strategies about how to deal with these things.) Goals are usually much easier to negotiate, but still important to think about carefully, as they will structure what is pushed in your child's learning (so in a way, they function like school testing). Discussions about goals are also a good chance to have a back and forth conversation about what you can do at home to complement what they are doing at school to help your child meet his goals.
4. Know that you have rights to challenge. If you didn't get to ask for something at the meeting, or you didn't have a chance to bring in supporting paperwork, or something new comes up -- you can ask for a new IEP meeting at any time. You don't have to wait the full year. If you did get to make your requests but the team did not agree to them, you have the right to challenge at a due process hearing. You don't have to understand how this works going into the IEP meeting - just know that if you weren't happy with how things went, that doesn't have to be the end of it.
5. Remember that it's a balance -- you're the best advocate for your child, but the other members of the team also want the best for your child. No one knows your child or cares about your child as much as you do, so you should come in prepared to advocate hard. On the other hand, the other members of your team (therapists, teachers, etc.) got into their field because they care about kids, and they want to see your kid succeed. They might say no to some of your requests because they have to think about competing needs (like limited school budgets, the needs of the other kids in the classroom, complying with the rules, etc.), and that's why it's so important for you to advocate hard - but it's also good to remember that these team members spend the whole school year caring for your kid, and it's good to give them respect and appreciation for that. Mostly because they deserve it, but also because building a good relationship with your child's team will be beneficial to your child.
That's the end of my tips. Having said all that - we have had a very good experience so far with Joshua's team. We (parents and school team) are mostly in agreement about services and goals, and when we have minor disagreements, the school has been very responsive to our concerns.
So I know I have some other friends who are / were also IEP parents, and also some teacher / therapist friends....I would love to have you share your wisdom & tips on this subject.
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