Nathan was approved for WAIVER in the summer of 2012. As of today, he is number 378 on the waiting list (the same place he occupied last August, though they do tell me he will move up considerably after July 1). If I remember correctly, we originally applied for the program summer 2011, though I may be off on that. Assuming funding is approved for 2015 at the current levels, Nathan SHOULD start getting services then. If not, then 2016. Five years after our original application. We are lucky-- we have had few problems with insurance. Heck, we HAVE insurance. We may struggle financially, but we dont have to choose between treatment and groceries. The WAIVER program will be an immense help to us, especially taking the burden of some of the case management and offering support, but it will not break us to wait another year (though some days I feel like it might) That is not true of others on this list. Marriages will fall apart, needed services will be discontinued, parents will throw up their hands in frustration, and children will give up on themselves while they are waiting on this list. Five years. In three years, Nathan has gone from a completely nonverbal child who was unable to focus on anything to a hyper rising first grader who can read, write, and do math as well as most other rising first graders, and better than many. What if we had been dependent on this program to get him services? In three years, John and I have struggled to hold some semblance of a relationship together against a backdrop of incredible stress--emotional, financial, medical . . . What if my parents had not been near to occasionally give us a kid break? I suspect we would be single parents, and frankly some days I feel like we are one more flat tire, ER trip, or dirty kitchen away from it anyway. John and I are private people who love to share our triumphs but dislike sharing our struggles. We love each other, we love these boys, and we fight the odds every day in spite of the fact that we now know without a doubt that sometimes, love isnt enough. No matter how much or how strong you love, it can not survive everything life throws at you. We fight every day to survive one more regression, one more struggle, one more sleepless night. Every day. We fight because we are dedicated to making it work, and because we are strong we have managed to do it this long. But what about the people who arent? What about those who cant take another storm? With approval for the WAIVER program, we felt validated--that yes, it was ok that we were drowning, that others saw our struggle and acknowledged that we needed help. And then you tell me that lifeline has a five year wait? We can do better. We have to do better.
Posted on: Tue, 03 Jun 2014 17:47:06 +0000
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