Monday, May 21, 2012

Thankfulness in Small Things

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This month has already been full of so many life's trials; a dog with a leg injury that required a vet visit and meds, Chris splitting his head open on our metal shed that required medical attention, Noah's benefits - or I guess lack thereof.

The special needs journey often times has a way of putting hefty weights upon your heart. You ache with emotional and physical pain; sadness about the past, worries about the future, problems of the present. Finding pleasure in the small things can bring about the biggest relief in a challenging day. A neighbor who brings you a chocolate goodie just to tell you that you are loved and thought about, a cashier who unloads your cart for you because they sense you need help without asking for it, a bird that lands on your doorstep just to peep at you softly before flying away. Nothing is ever taken for granted and you find beauty and peace in places you never dreamed you ever would.

I can't report with complete certainty that Noah's Medicaid will continue in June, however from all the phone calls I have made it seems that he is still showing active at the moment, we are hoping that the appeals we have filed will at least stay Noah's benefits for June until SSI indicates we will be reinstated in July. They are calculating March as a 5 week month which puts parental income over the guidelines, thus being a slow agency that is 2 months behind, our penalty comes in June with $0 benefits owed to Noah. We of course were not requested to report monthly until this year so we never faced these on again off again problems with SSI and 5 week months. Yet they tell me we are not permitted to report yearly now. So I anticipate that this will very much be an ongoing problem for us. Noah is on the long-term wait list however I was informed that due to his high wait list number it is estimated he will be on that list 3.8 years. That is a very long time in the world of a struggling special needs family. I also also a bit confused as Noah is on the C-HCBS waiver wait list which offers him the same benefits he receives on SSI/Medicaid - I understand that there is also a CES waiver but have been told the wait list is 7 years but that it offers more services like home modification and respite care. Both programs terminate between the ages of 17 and 18. Which seems like a long time to be on the wait list, only to get kicked off a few years later. Of course no one really tells you these things and I only found out about the CES waiver program due to Noah's current crisis without SSI benefits and me desperately seeking out anything on earth program wise that could assist Noah. Regardless none of this is something that can help us in the near future. Our only hope is maintaining SSI and therefore keeping Noah's Medicaid.

I am going to pray that come June Noah still has insurance. And am asking for all prayers to come our way that Noah will get through June medically insured. Although we have become dependent on SSI funds to get us through helping with Noah's out of pocket costs, our primary focus is the insurance over his financial benefits. I've called as many advocates that I can track down, Colorado Coalition, Family Voices, the ARC, governor's offices - none of which have panned out at all. I think I'm on my own. I am a solider of one.

There are however some good news I hope on the horizon; we received confirmation that Noah was approved both for a Flamingo Toilet Seat, and Full-size Sleep Safe Bed. The equipment vendor says we are the second family that they have worked with that has been given approval and all involved seem surprised that it was approved. Of course we were denied previously for a toilet seat but asked that a second request be put in so we could pursue a timely appeal. We never expected we'd go straight to an approval without a fight on either item. Yet God hears our prayers, he knows we are working as hard as we possibly can for the precious soul he has intrusted in our care.

I am a little worried that Noah will have some adjustment problems from going from sleeping on a mattress on the floor to a bed with a frame and closed in sides. Sometimes change is challenging for Noah, I am praying that the windows in the bed will allow him not to feel so confined or boxed in and that it won't put him on sensory overload.

Thank you all for your continued prayers and positive energy, we sincerely hope that the storm will let up soon.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.