Tonight I went to the local library to the first of a series of seminars given by the local agencies that service the community of people with disabilities. It was mainly an introduction and overview of the services and programs provided to Maryland citizens over the course of their lifetime. I don’t often spend much time thinking about what Edda will do or where Edda will be once she’s 21 and has aged out of the school system, but I was surrounded by parents of kids who are graduating from high school trying to navigate adulthood.
There were some frustrations, figuring out how to apply for appropriate day programs, how to get medical insurance coverange once the child has turned 18, how to secure expenses for vans/home modifications.
I’ve been working this past week on how to get funding for an adaptive van and a lift for the stairs. I do not need this right now, I think Edda will need them in a year or two, but I think there is no funding from the state for these kinds of environmental modifications. My guess is that beyond the cost of a regular minivan, the truly adaptive minivan will cost another 30K and then the chair lift, maybe 15K.
Sometimes I wish I could peek in on Edda’s life when she’s 20 or 40 to know that somehow we will make it to that point in one piece, to know that she will have found her place in the world and that she is happy.