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The Insider Fall 2008

• You Don’t Need a Title to Be an Advocate (Full Version)
  

You Don’t Need a Title to Be an Advocate
By Donna Bouclier
Advocates! Just who are they? Actually, they’re all of us, each and every day in every situation – correcting an incorrect billing statement with the customer service rep, or telling the auto mechanic you are not paying for an outrageous bill. The list goes on forever. We already make sure our voices are heard and respected in our daily lives, yet when it comes to “advocating” for our children, we might leave it up to the “professions”. That may be risky. After all, if it hadn’t been for advocates, people would never have left the institutions. Our children with special needs would not be in public school. There would be no community living homes, or employment opportunities. And there would be no laws enforcing the same civil rights for our children that you and I as citizens cherish.

We have to remember our past in order to keep the future positive. If we don’t know, we don’t know and that’s dangerous. The advocacy movement, from historical accounts, started about sixty years ago in our area by a group of parents who wanted something better for their children. They united with a common purpose – to support each other. What came about changed history!

In the late 1940s, Eleanor Elkin, the grand dame of the mental retardation movement in Pennsylvania and The Arc US, and Pearl S. Buck, (yes, the famous author) started meeting with parents in Bucks County. These parents became fundraisers, meeting coordinators, supporters, strategizers, and a force to be reckoned with legislatively. Other counties followed suit. Women got together and raised money to support developing programs that had paid staff. (In The Arc of Philadelphia, these women were called PARC Aides, and they actually raised every dollar that was paid to the fledgling organization’s staff for many years.) Parents were the moving force behind development of services and educational opportunities for children with special needs.

As time passed, so did our culture. Most mothers didn’t work outside the home fifty years ago. They do today. Time that these parents used to have is taken up with activities for the other children, caring for the special needs child, and working to make ends meet. Meetings are left to those who can fit them into their schedule. Does that mean disinterest? Absolutely not! Instead, what used to work is no longer practical. Advocacy of today still means getting involved. You don’t have to attend meetings to be kept in the loop, but please connect with others whatever way you can. Realize that advocacy is a team effort – you, your child, your family, and everyone else! Talk to others and learn. There are numerous parent support groups, the wide-ranging Internet, resource libraries, neighbors, and advocacy organizations.

The system is changing again. If we don’t stay involved, we will allow decisions for the future of our children to be left to others. More risk! Remember, you don’t need the title “advocate” to be one. You can be one every day by just staying informed by whatever means works for you. You will then know when things are again getting “iffy.” You won’t be caught by surprise. And you will know how to speak up and be heard.