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I am a member of my state's Special Education Advisory Panel. As a member, I can tell you that the system isn't working!

Most of the parents on our panel are actually school district employees who never even speak about their children. They speak only of their districts and how to keep parents in line.

Here are some examples of what I heard in a recent meeting:

• Too many parents are mad at the Department of Elementary & Secondary Education (DESE) and so they join the Special Education Advisory Panel (SEAP) to advocate for their children.
• Parents hold up the meetings with complaints about DESE. Meetings would go smoother if parents were not adversarial.
• Parents should have little to no impact on decisions regarding programming.
• Parents aren't normally on these panels because they only want people that have decision making rights on these panels. (Translation: parents have no power.)
• Parents couldn't possibly make the commitment to attend these highly technical meetings.
• DESE should limit the number of advocates that come to IEP meetings. The panel should develop some wording about how advocates would be forced to behave.

There were two people at the meeting that had no other agenda other than advocating for our children. Not very good odds.

Serving on Your State Panel: A Tutorial

Frustrating, isn't it? Notice I didn't say it was easy.

Nevertheless, it is a committee that by law -

1. has parents as the majority of its members,
2. monitors the system, and
3. produces a public written report.

If we can't do something with that, we need to practice until we can.

I was curious. I looked up the state laws specific to your state's Advisory Panel. You have everything you need to have in place to put the parents in your state running this Panel. To find the laws in your state, go to the website of your state Department of Education and search for "Special Education Advisory Panel or Council ".

Making the Law Work

Here are some things you can do to make it work as it should.

• Get a steady number of parents to attend, month after month. It is a public meeting. The great thing about parents is that they work as legislators, newspaper reporters, website designers, attorneys, newspaper publishers, whatever you need.

  Talk to the other parent members and convince them to attend all meetings. Encourage additional parents to apply for membership. Give them all copies of the 2 laws (state and federal) that apply and a copy of the open meeting laws so they all know the parameters within which they will need to work.

• Be nice, quiet, under the radar as needed, and keep at it.
• Read your state open meeting laws. See that the Panel follows them.
• Keep the minutes of this public meeting public. Provide a link to the Panel website from your autism website. Post the laws there too so more parents may become interested in the Panel.
• Don't let anything get personal.
• Do not think in terms of them and us. Think in terms of what the laws say the make-up, transparency, and work of the Panel needs to entail.
• Read both the federal law and state law that cover your state advisory panel. Make sure all of it is running as it should. I took a day a while ago and made a list of all the advisory panels that have websites or a webpage on their state website. See what other states do. Your Panel looks pretty well designed.
• Offer a public comment period at the beginning of every meeting. This may be one thing that helps. The easiest way to get this approved is to have several parents quietly and nicely attend a few meetings as spectators. Then have one of the Panel members suggest the policy of offering a brief public comment at the beginning of each meeting, and a process for written public comment. NH offers that. Check the NH SAC website on the list below and see if you like that wording.
• Start making motions. Get decisions and discussion into the minutes and into the public.
• Find someone to lead this "take-over." If you are not good at leading, find someone who is better at it and work with them. There will be enough work to go around.

It is our law. We need to make it work. It is embarrassing that there are millions of parents of disabled children and this is all we have been able to do.

The Tipping Point

We need to quietly plan to take over the system that can give our children what our laws entitle them to. We need to think in terms of The Tipping Point.
http://www.amazon.com/Tipping-Point-Little-Things-Difference/dp/0316346624/ref=nosim/thespecialedadvo

President Obama did not win the election by doing one thing or working in one direction. He did all the jobs, the big ones, the small ones, the very difficult, time consuming, the expensive, the very inexpensive, the easy, the repetitious, whatever it took.

You need to "take over" your state, your Panel, your work, as if failure is not an option. You will fail most of the time. That is why no one else has fixed it yet. Just ignore that.

I read somewhere about how many thousands of failures Thomas Edison had before he invented the light bulb. How many people have thought the Berlin Wall was permanent?

You need to be the crazy person that plans to change what other people have given up on. They just were not as motivated or persistent as you are. Or maybe they were. Maybe they worked to get these laws passed in the first place and now all we need to do is see that they are implemented.

Forget about what other people on the Panel are doing that is not useful. Concentrate on what you will do, both on and off the Panel. Empower yourself and others to make the Panel work as it should, because the Panel is one part of making the system work as it should.

List of all Panel websites I was able to find.

http://www.copaa.org/pdf/StateListings.pdf

Link to open meeting laws
http://www.rcfp.org/ogg/

More Articles from Sue Whitney

The Most Powerful Advocacy Tool in IDEA 2004: Your State Advisory Panel

How to Work Effectively with Your State Advisory Panel

Doing Your Homework Series

Revised: 11/10/10
Created: 05/14/10