Sunday, January 26, 2014

Help, I Need Somebody

Pervasive Parenting

By Kodey Toney

Help, I Need Somebody

If you have a child with a disability, whether it is a developmental disability or a learning disability, chances are you’ve had to meet with your school to come up with an Individualized Education Plan (IEP). Those words seems to send different emotions through parents when said out loud. Anger, fear, anxiety, tension, and distrust are all common feelings prior to an IEP meeting. One of the main reasons behind this is usually the lack of knowledge and preparation on behalf of the parents. However, it doesn’t have to be this way.

I have talked in the past about different ways to prepare for a meeting, and how to act while in the meeting. The us-against-them idea is overwhelming, and it is usually imposed by both sides. If you have a good mediator in the room who is looking out for the best interest of the child (which is where the focus should be), and can make sure that you keep on track and stay within the guidelines you will usually have a more productive and less stressful meeting.

This is where an advocate comes into play. There are tons of rules and regulations involved in advocating for your child. You as the parent are your child’s best advocate. However, there are times when the IEPs, IDEAs, 504s, and FAPEs can be too much to comprehend; especially when you feel like the people across the table are out to get you. If you have someone who knows the rules, and has some experience with these types of negotiations you will most likely have a better outcome.

So what is an advocate? One definition states: “Advocate - helper: somebody who acts or intercedes on behalf of another.” This means that they first and foremost are a collaborator. They don’t take over the meeting. They sit back and mediate. They only intervene if there is something that seems to not be going the way it should. You have the right to have an advocate in your IEP meeting.

Part of my training in Partners in Policymaking was on advocacy skills. One of the things we were taught was that it is not an us-against-them mentality that gets you to where you need to be. You have to first go into the meeting and lay all the cards on the table. Explain what you want, what your fears are, and what you think needs to happen to get there. The other side “should” do the same.

Again, I know all of this sounds great in theory, but an advocate can help. Sometimes you’ve dealt with the school so long that it is good to bring in a new face. Many schools are not used to someone who is educated on the regulations, and let’s face it; many schools don’t really know the regulations even though they should. That is not a knock to the schools, it’s just that often times they have not had to deal with these issues and need to be educated or refreshed.

There are several places to look for advocates to help out. I am an advocate and have worked with several families in the area already through the Pervasive Parenting Center. I would offer my services free of charge to anyone in the area. This includes consultation on a current IEP, or mediating an upcoming IEP. If you need help feel free to contact me at

Of course there are others that I would recommend as well including the Oklahoma Parents Center. You can contact them by visiting their website at

Another great resource, especially if you think you are not getting what you need legally, is the Oklahoma Disability Law Center. They are free as well. They are the organization that offers the Wrightslaw conference every year. This is a conference that Jen and I went to last week. It is our second conference and we learn so much good information each time about disability law. You can find them at

Again, make sure that you are getting what you can to help your child, and if you feel like you’re not find someone who can help you.

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