Navigating The Fire Swamp

I mentioned on Friday that this week there are three big conferences taking place in Colorado this week that have the potential to help shape the future of services for individuals with one or more developmental disabilities in our State and throughout the country.

The focus of these discussions is often on the individuals, but I think it is important that we also include parents in these discussions. Think of what parents have to go through: they get the news that their child has a developmental delay or disability, which will undoubtedly have a profound impact on them for the rest of their lives, and then they are instantly thrust into the complex world of services. Things don’t get any better when the child reaches school age. Navigating the school districts and their services is no walk in the park, either.

But perhaps the most difficult time for parents comes when the child transitions out of school. Suddenly, there are waitlists, fewer service options, and a lot of unanswered questions. Parents can feel as if they are falling off of a cliff, or trying to navigate the Fire Swamp in “The Princess Bride.”

So I hope that the discussions that take place at these conferences include input from parents and are focused on creating “packages” for parents that better prepare them for planning for services for the life of their child, instead of the artificial segmentation the current system has created. It should be interesting!

Then again, what do I know?