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from Spring 97 issue

Partners

by Mel Dugosh, Pipe Creek, TX

In 1985 when my son was born with significant disabilities because of a condition known as Cornelia de Lange syndrome; the stress of that alone was overwhelming. However, while still grieving for the "typical child" that I had "lost" and dealing with the unexpected "tragedy" I now had, I also had to contend with paying the mounting medical bills and possibly continuing to work at a full time job in order to maintain insurance coverage.

It was very hard learning to speak the "language" of the professionals. To suddenly have to deal daily with the countless social workers, education professionals, and the medical community's concerns for my son was a most daunting task. Frankly, I was not at all optimistic about my son someday living independently in this atmosphere.

So how do you teach me and thirty other equally tired and discouraged parents of children with disabilities the ultimate potential that our kids have for living independently? You lock them up for 8 weekends over a period of nine months with ten of the most extraordinary adults with disabilities. Adults that now live independent and productive lives, adults that have been through the system and succeeded by their sheer will and determination. Amazing adults that can tell it like it is.

The Texas Planning Council on Disabilities began its program called Partners in Policymaking in August of 1990. Participants explore current developmental disabilities issues, best practices, and the policymaking and legislative processes at the local, state, and federal levels in order to strengthen self-advocacy skills and increase personal empowerment. The overall goal is to achieve a productive partnership between people needing and using services and those in a position to make policy and law.

Our class began meeting in Austin this past August. Our session topics have included the History of the Disability Movement, Inclusive Education, Supported Living/Employment, Family Supports, Federal and State Legislative Process, Assistive Technology, Positioning, Positive Behavior Approaches, Negotiating Bureaucratic Mazes, Advocacy Organizations, Parliamentary Procedure, and Community Organizing.

During our session in January on the State Legislative Process at the Texas State Capitol we met with our own local political movers and shakers. Later we were able to provide legislators of the 75th Legislature with public testimony of our own personal stories in the Senate Chamber.

In order for us to graduate from Partners training this April, each of us must complete one major project such as serving an internship with a public official, organizing a letter writing campaign, or organizing special receptions or town meetings for public officials.

Originally my project involved researching the experiences of families of children with disabilities and adults with disabilities in church communities with the ultimate goal of improving those relationships. I personally feel that for inclusion to succeed in our communities and schools that churches must take the lead and set the example for all the others to follow. Recently I have agreed to work with Partners graduates Kim Pulis and Tom Immenschuh to create a nonprofit organization that will specialize in assisting families and individuals with disabilities to plan and coordinate their financial future and other specific needs where resources are not readily available.

My Partners experience was an eye-opening one that has helped me to be a more positive and professional advocate for my son. The Texas Planning Council for Developmental Disabilities is now seeking applications from people with developmental disabilities and parents of young children with disabilities for classes that begin this fall. For more information, contact Susan Murphree at the Texas Planning Council in Austin, 1(800) 687-8072.

Editor's Note: If you would like to visit with Mel about her experience, contact her at (210) 510-4495.

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from Spring 97 issue