GCDD Listening Tour: Surviving the Jungle

"I know what it's like to be a parent lost in a jungle with nobody to help." Carolyn, the very first person to show up for our Columbus Listening Tour, spoke those words to me to sum up her experience as a mother trying to support her daughter with a developmental disability. Unfortunately, there seem to be a lot of folks who feel lost in the jungle in Columbus. And as our conversation unfolded that night, I could understand why.

There is one big piece working in Columbus, and that's recreation. There were smiles on peoples' faces as they talked about baseball, cheerleading and the Parks and Recreation programs. The Springer Academy got lots of shout-outs as a terrific inclusive place to be. Dr. Greg Blalock of Columbus State (and our local host for the evening!) and his dynamic wife Sheetul Wall are bringing wonderful things to the table, like inclusive post-secondary education and a Best Buddies program. Folks have high hopes about the new school superintendent, and it was great to connect with the transition coordinator, who was one of our attendees that night. One mom of an adult daughter commented that it was heartening to learn about how many opportunities, especially for kids, were springing up.

Unfortunately the happy tenor of the conversation stopped right about there. There is a huge amount of need in this community, and a real lack of accurate information and adequate support. The word I wrote in all caps in my notes is "DISCONNECT".

One mother reported being told by regional staff that she had to give up her son – so that he could be institutionalized - in order for him to get services. Several people commented that their regional employees regularly tell people that they're not allowed to apply for a waiver until they're 22. Others commented that they've heard from the region that no one here wants community services. It was mentioned that Region 6's wait list numbers are low, because people don't understand what services and supports they can apply for – and because some people have just plain given up trying. Again, DISCONNECT – people are disconnected from good information, from access to supports and services, and in many ways, from each other.

In short: there are a lot of issues going on with the region. And, full disclosure, I've connected with some folks since then to try to be a small part of making things better. But there was another piece I felt at work in that room. And that is, in Columbus, you have a lot of dynamic, frustrated people who aren't necessarily talking to each other. Is that understandable? Completely! When people are under huge amounts of stress, I think it's only natural, and sometimes necessary, for them to focus on the issue that's most directly confronting them. But when there are so many individual stories that point to big collective problems, there is a lot of power to be had by people coming together and pooling their stories, ideas and energy. Once you've got that pool, it's easier to see what the big pattern is: what needs to change, who can change it, and how to get it done. And the key, as several folks put it, is unity – to move forward with one voice and common goals.

That's not easy. But it's so very powerful.

The GCDD Listening Tour kicks off again on September 4 in Gainesville. Join us and have your voices heard by GCDD!