Where will my son be when I am gone. I've thought about that for 24 years and hopefully will think about it for 24 more. I have tried to put everything in place so that he can live a life as independently as possible. But he will still need support - a lot of support. Who will give it? Will he end up in a horror of an institution like where I worked when I was young? Will he lose all his freedom and be forced to live in a group home that does not respect his individuality? Will he have as I have planned a caring person in his life who will live in what is now my part of the house and be my replacement? But can I be replaced? Can any parent be replaced?
It would certainly be much easier to replace a person with the skills necessary to do the things I do if the Community Choices Act was passed. The passage of this act is absolutely essential to the youth of today as they will in the future be those who need support and have lived a fully included life and don't want that to end - ever. But the way we fund health care now - that can certainly not be guaranteed. It doesn't matter that if in my son's case and in most, but not all others, it would be far more financially efficient to provide the services he needs to live at home.
I need to feel that his future is secure. That he will have the life he wants. The life he deserves.