This weather of course does nothing to help with the personal rain cloud I'm feeling as a result of spending an exorbitant amount of time this past weekend drafting a legal appeal for the denial of Noah's disposable medically necessary pillowcases to accompany his anti-suffocation pillows that the State purchased earlier this year. I do really feel bad that I have to take up the Court's time with a pillowcase issue, but I'm so totally over being railroaded into the State keeping Noah's benefits that are allotted to him each year. A purposeful move on their part. Eventually, I would think they would get exhausted doing this tango dance with me and just fund what is needed in accordance with his CES yearly funding plan. It irritates me to no end when I hear other parents saying their needs are being met and their requests fulfilled when Noah sits on a handful of denials. It's definitely not a consistent program, and they have no real valid reason for black-balling Noah from benefits as I haven't been unreasonable or out of line with them. In fact I'm likely being WAY to kind to them every time I have to correspond with them. Different counties can somewhat run their own ship as they feel, most of this is caseworker or supervisor discretion. It wasn't a good time drafting the appeal request but so be it. Sometimes you feel like you have nothing more to lose.
And Friday afternoon I got my nice weekend surprise.... a Social Security Overpayment Demand. Just fabulous. I am so over these too. I faithfully turn in Noah's daddy's pay stubs monthly. I fax them and send a copy by certified mail because they have been known to say they didn't receive a fax. So I spend the extra money to also have documentation of a certified document being signed and received by them. It's really my only concrete protection that so they can't deny timely receipt. And I'm good at this - I never forget to do it - not ever. So when I get these overpayment demands I'm especially livid as it's not because I'm not doing my part and sending them pay stubs. It's their error (always) because they yet to this day lack the ability to do accurate math. But what this means for me is more time that I have to fill out both a Waiver form and an Appeals form (because you never really know which one they'll accept). And I have to of course make copies of my certified receipts and fax confirmations to shove back under their noses to remind them I am right and they are wrong. I shouldn't have to always do this. But they've made a habit out of it.
I wish I didn't have to be dependent on either system, County Services or SSI, in fact I think they rather put parents like me through the ringer in hopes that they can force us to go away and voluntarily withdraw from government assisted programs that are specifically designed to help the disabled community. But I have no other choice in order to help Noah and financially provide for him in the only way I know how.
I do have hopes that eventually I will make the right connections, and that it will lead me to a way to reach those that have the ability to hear Noah's story and to make the changes that need to be made not just for Noah but all those following in our footsteps. My soul says I must change things, that I cannot allow another family to suffer like we are. That I must find a way to stop it for future generations. It doesn't have to be this way. And it will take so much pressure and worry away from parents that are already struggling just to cope with their child's care and diagnosis. We do not need to be adding these additional problems to their struggles.
In the meantime I had some hopes that if I could get it to stop raining here that I'd find a way to get Noah to Give Kids the World (a place that requires a wish granting opportunity to get there)... so far that seems to not be going well either. Not sure that will ever happen. Never mind me, off to find my umbrella so I can try to let it all roll of my back (if that's even possible).
"Our lives begin to end the day we become silent about things that matter." - Martin Luther King, Jr.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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