This post is directed to those of you who have children with special needs who are either on government assistance right now or are under the belief that when your child is older and you are no longer on this planet that the government and/or our society will be there to take care of your child.
In a nutshell, I have been going through a government assistance nightmare for the past three weeks in regards to my son’s benefits. And the issue is not yet resolved. I am hopeful that I will get it resolved because I am relentless. Really relentless. Supposedly, Blake has a support coordinator to help with the issue. Uh huh. Well...let's just say, being polite, that she did her best, but her best wasn't near good enough.
So that is where I come in. Mrs. Relentless. Since November 1, all Blake's services have been terminated because someone forgot to send me a letter to tell me that Blake had to reapply under a new program. So they take responsibility. But they don't take action. They accept that they dropped the ball, but this admission does not make them snap to it as you can see. And the biggest problem is that no one knew what to do for like two weeks. So I was calling every agency. Every state agency. Every federal agency. No one knew what caused the issue or what to do to solve it. Then just by a luck of the draw, I sort of figured it out. But then, I guessed on how to solve it, and I was only half right. Well, in this situation, being half right is like being almost pregnant if you get my drift. Yep-you guessed it. The pieces just didn't come together.
Well, today, we seem to have 80% of the pieces in place. But still no benefits. Maybe tomorrow I can find another puzzle piece and then the next day...who knows? It's an amazing journey-one which caused me to end up in the fetal position on the couch in the middle of the afternoon watching TV.
Dealing with the government and having to handle the fact that Blake has no benefits is part of the frustration. But the bigger part is the fear that no one will be there to fight for him when I'm old or dead. There is no Mr. Relentless or Mrs. Relentless Jr. just waiting to take over. Nope-there is going to be a better solution. The only one I can think about is the planned residential community. At least there will be a team of professionals who are there to handle these types of problems if they come up. So I am back at it. Working with a great group of parents trying to develop Mariposa Village here in Florida. If you live in Florida, you can join us for a webinar meeting Wednesday evening November 20 at 7PM. Email Debbie at firstname.lastname@example.org, and she will send you the directions.
Meanwhile, check back with our website which is under construction right now, but should be up by November 21: www.mariposavillage.org
Take care and wish me luck!!