Of all the tools a good advocate needs, information is the most important.
No matter what you might want to advocate for, it’s important to get the best information you can. During the K-12 years, parents get a steady stream of information from the federal special ed apparatus. There is a federal requirement called Child Find that mandates that schools find and evaluate every child with a disability and most children with Ds begin receiving services before they turn one. We get medical information from the parade of doctors that we meet soon after our child’s birth – including cardiologists, geneticists, and assorted therapists. When a child with Ds is delivered into his parents’ hands, his parents are delivered into the hands of many, many, “professionals.”
Unfortunately, at age 21, or graduation from school, which ever comes first, the flow of information stops. Parents are pushed out, “over the cliff” we like to call it. Children grow out of early childhood medical concerns and school is over. Suddenly, we have to find information and services on our own.
To add to to the problem, many of us fall into a false sense of security where we believe the professionals know what’s best for our children and families. I’ve heard many stories of how, prior to graduation, school personnel convince parents that they are required to get full guardianship of their child or face horrendous consequences like losing their child.
This is the same situation parents found themselves in years ago when professionals had the power to convince us that institutionalization was best for our child. A lot of better information has been created and collected since then.
We just have to get better at sharing it.