Thursday, December 11, 2014

Tis the Season

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Seems like this year our holiday stress just keeps mounting.  Generally the holidays can be challenging for us anyway, trying to juggle gifts with very little financial resources, and then there is always that anniversary of Noah's birth and the remembrance of receiving that call in my hosptial room that Noah likely wouldn't survive Christmas Day and needed a blood plasma transfusion to help him keep fighting, all the while a priest placing a rosary in my hand and curling my fingers around to hold it.   People tell you to never look backwards, but I think it's human nature to grieve periodically especially during those same times of year.  Christmas unfortunately just is my time when I associate things with a tragic event our lives that changed the course of the rest of our lives.   The unhealthy part would be if I stayed in that constant state of sadness, and I don't.  So I occasionally give myself permission to say it's okay to cry about how it all started, but it's also okay to appreciate the miracle of Noah's life and how far we've worked together as a family to get where we are today.   It's a balance.  I try staying busy and investing my time in others helps to facilitate that I don't dwell and devote an abundance of time on remembering our holiday start as a family.

And while I balance all of those feelings and memories it seems this year I get an added bonus of stress.   Noah's bathroom continues to be up in the air.  Just when I think I have things sorted and his caseworker confirms all has a green light, I receive an email saying that even though Noah got a Medicaid approval for his modified bathroom, that they don't feel the contractor can adequately have it finished by the end of the year and therefore are pulling Noah's funding for it this year... thereby giving the state nearly 36K of Noah's money to keep.  Feels like a premeditated game they play.  Pulling out all the stops they can to say no, even with a Medicaid win.  Telling me I'll have to pursue this in the new year with a new pot of money for Noah, which means that I will have to continue to do without other services two years in a row.   Upon calling two supervisors, their story has somewhat changed but not entirely.  They say that they may partially fund this project with this year's money and may partially fund it with next year's money.  Still not really how I think this should happen and a way to simply pocket Noah's funds. 

Knowing how this all works I wouldn't be surprised if they all receive an end of year bonus for "conserving the state's funds" as a caseworker so delicately put it to me over the summer when I faced our first denial for the bathroom modification.  Seems to be everyone has an agenda and helping Noah isn't really at the top of the list.  The contractor assures me he'll work feverishly in the next few weeks to get as far as possible, yet I have no trust with the state whatsoever.  I wouldn't put them past them to allow the contractor to do all this work and then say yep we're still keeping this year's money and it has to be paid out with next year's pot.  Leaving Noah in the lurch without homemaking services, respite,  a much needed stair lift, therapy costs, and augmentative communication assistance.  Apparently the state is now offering diaper wipes in the Waiver program, as that was supposed to be my consolation prize - just buy some wipes with the money we plan to take from you this year - really adding insult to injury as we all know that I can't take on 36K in diaper wipes.   My only saving grace if I can manage to navigate out of this, is that God may have sent me a way to provide for the $4,163 that we're short.  It may require a bit of help from our loving friends, but I'm hopeful and praying as God may have just sent us a blessing.

But the State isn't my only battle.  I filed a formal complaint with Noah's DME Monday for holding a piece of equipment ransom after a mutual agreement and a signed promissory note that they'd deliver it to me faster than waiting on Medicaid approval because Noah needed it.  They too lied and went back on promises now changing the rules.  Over two months later and they have had the item in their possession since November 11th, but won't deliver it.  They still want to ask Medicaid for approval and haven't even yet submitted the request for Noah's doctor to sign off on it, let alone sent it to the state for consideration, meaning likely another three months or more from now.  Besides that fact they were going to send the request to a doctor he hasn't seen for over two years.   They are just a disorganized mess that doesn't have their act together, not to mention they are highly unprofessional and don't even have the courtesy to return phone calls no matter how many messages I leave.   Noah continues to be without even though I was promised this item in less than six weeks.   Even after filing a formal complaint I had to call back to corporate headquarters again because they still failed to address my issue within the promised 48 hours.  And now the regional manager's voice mail says she's gone through the end of the week.  Convenient.  I have high doubts I will have resolution of this before Christmas, and it makes my blood boil because I'm so over everyone's lies. 

And the icing on the cake I suppose is SSI's notification that we're being audited on December 18th.  Always so nice of them to pick the date and time for you.  Not the kind of holiday greetings one would hope to receive in the mail.  I kind of anticipate how it's already going to go.  Even though I provide them with Chris's pay stubs faithfully by certified mail (since they like to deny receipt) each month, they'll say they didn't hold onto them or copy them and demand a whole year's worth again, even though they've seen them and recorded them monthly.  They'll go over the lack of all assets we have, they'll give me two weeks or less to send in all of the pay stubs again.  Threaten to withhold Noah's benefits if I fail to jump so high before Christmas.   I'll be forced to go into overdrive and hunt them in the basement again, copy them again, and send it all certified again.   They may send me a letter saying things remain in place, or they may send me a letter saying they messed up and failed to properly notate something and demand an overpayment for their error. 

And in the middle of all this I'm trying to prepare for Noah's 6th birthday, find a moment to teach Luke how to make holiday cookies and have the boys build a gingerbread train together, wrap presents, grocery shop, avoid the snow with a wheelchair and keep going like the true trooper that everyone thinks I can be.  Merry Christmas in true special needs style.


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