Wednesday, November 18, 2015

I Still Matter

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There is never a day that doesn't have a type of challenge when you are a special needs parent.  You wake up knowing inevitably each day will be hard, no matter what comes along.  I've grown to accustomed to a level of acceptance that things are they way they are.  Although the assumption shouldn't be that my acceptance of difficulties means I've lost the fight in me or that my fierce desire never to give up has diminished.  I do grow weary - how can I not?
After spending over 14 hours on the phone in the last two days added to the care Noah requires and he attention that Luke demands at his tender young age, I have moments of feeling lost and without an avenue of successful direction.  It feels a bit like wandering in circles.  One problem seems to branch into several others and before I know it I'm in the middle of a complicated mess.  And this happens far more often than I wish it did.  A cycle to a large degree that keeps repeating itself - just with the origination of a different problem.

I received notification in October that due to Obamacare that the health insurance policies for Luke and myself were being terminated at the end of the year.  This forces us to enroll in another plan by December 15th.  I've had a broker helping me for years trying to navigate the cheapest healthcare plans she could find for the two of us; Noah receiving Medicaid and his dad receiving health benefits from work, leaving Luke and I to find private coverage.  The new plans were rolled out and the monthly premiums not only increased but so did annual out of pocket maximums and deductibles.  Plans pushing us well over $400 monthly for just two family members. 

My mind racing for a solution.  How to do I keep us having health insurance that admittedly Luke would certainly need if he catches a cold or gets an ear infection?  And God forbid I need a doctor so we have to have healthcare coverage as a safety net, not to mention Obamacare puts in place penalties for those without coverage.  We already are doing without dental care coverage.  I put my face in the palms of my hands, feeling desperate for a solution.  And then I started looking through a pile of papers that I have sitting on the kitchen island.  It's a pile that I keep filled with things I'm working on, sometimes things for Noah, or for other people in the special needs community.  It's much like a continuous research pile or things I need to get done.  Essentially my special needs in-basket.  Flipping through pages I stumbled on a printout of the IRS Notice 2014-7, 2014-4 I.R.B. 445, issued January 3, 2014. 

For those not readily familiar with the Notice it is a provision that states certain Medicaid Waiver payments may be excludable from income.   Special needs parents haven't really been sure what to make of this notice.  Does it mean we fall under this category for parental income CNA under this new rule since we are essentially saving the State money by caring for them at home and not asking for institutionalized care - thereby deeming Medicaid and CES income difficulty of care payments and as a result changing how we file our yearly returns?  Some parents feeling comfortable with the Notice have filed amended returns months ago, while others like myself have sat on the fence not really truly understanding the language of the Notice and fearing we could face an tax audit if we weren't one hundred percent sure.  

Yet as my fingers thumbed through that pile I kept going back to it.  Thinking it would totally change our health insurance predicament and that if we indeed fell under the umbrella of 2014-7, that Luke would then qualify for Medicaid alongside Noah and I would be eligible for a tax credit towards a individual healthcare plan.  Something that could save us hundreds of dollars in healthcare costs for the both of us.  I've always been a person who has to be completely sure before I do something.  I'm not a follower.  I'm very careful and calculated about the decisions I make knowing that everything I do and decide is important and could effect Noah and even Luke.   So, I consulted with other advocates in the community, and then ultimately picked up the phone and contacted the actual person at the IRS who wrote the notice.  I figured if I confirmed that I fell within the 2014-7 guidelines from the person who drafted it, then I'd feel comfortable moving forward.   I received that reassurance by way of that telephone call and then contacted our tax accountant so she could start the process of amending three years of tax returns and preparing on how to file our 2015 tax returns, which I hope will ultimately be our saving grace on obtaining affordable health insurance.

Our tax accountant indicated it's fairly easy to amend for State and Federal taxes based on the 2014-7 Notice, what still was unclear was how to handle SSI and Medicare tax, which of course left more calls to the IRS and ultimately trying to reach Employment Tax Attorneys and Chief who also participated in the drafting of 2014-7.   In the middle of all those phone calls I was spending hours on the phone and online trying to complete the online application through Connect4Colorado.  Ultimately, the application refused to let me complete it because as soon as typed in Noah's information the system recognized he already had Medicaid and terminated the application.  After hours on the phone with Connect4Colorado and their insistence that they remove Noah from Medicaid status and I simply just "re-apply for him later" with me demanding they don't do that because Noah would lose his waiver status and he can't be without Medicaid not even for a second. I was adamant that wasn't an option just to apply for healthcare coverage for Luke or myself.  A supervisor finally giving me a number to Peak as Connect4Colorado just is a third party agency.  Peak of course has this standard recording that says their call volume is too high and call back another time.  But you could call every single minute of the day for the next 30 days and get the same recording.  The State would be better off to simply leave a message saying all attempts to reach them by phone will be rejected.  That's the truth.  I'm not even exaggerating or being sarcastic. 

In frustration and near tears, I call back our broker who I know feels for me but can do nothing since most brokers refuse to work with the State because the State doesn't pay them even after many promised payments that are years overdue.  She can't help me but offers me a contact that she found for my local county with CHP.  My last potential avenue for help.  I call that person and immediately get a return call.  Incredibly nice, I'm told if I go down to my county's Medicaid office before 5pm and fill out an application in person I can bypass Noah's status as already being on Medicaid and the State will evaluate eligibility just for Luke and myself.  I arrive at 4:10pm after lining up care for Noah.  It takes a minimum of thirty days for a determination and I have less than thirty days to beat my December 15th deadline.  The clerk tells me I have to fill it out by 4:30pm (even though they are open until 5pm) I comply and race through that application speeding through the questions feverishly.  My handwriting clearly an indication of stress and time constraints.  I get back in line at 4:29pm.  I made it.  With a minute to spare.  The two available clerks where heavily engaged in Spanish-speaking conversations with the two people they were helping.  I patiently waited my turn.  Clerks even smiling and seeming to be overly friendly with the two people they were helping.  I of course having no clue as to the conversation since I am not fluent in Spanish.  I was called to the window at 4:36pm when it was my turn.  Both clerks jointly curt and cold and instantly their previous smiles for the people ahead of me turned into instant disdain telling me they were refusing to accept my application because they told me I had to turn it in by 4:30pm.  I said I was in line at 4:29pm and couldn't help that they were assisting people before me.  One clerk rolled her eyes in my direction as if I was a pathetic cause in front of her.  She said rules were rules.  I felt as if they both were looking down upon me as if I didn't matter.  The little white girl down on her luck filing for government assistance.  I couldn't speak Spanish to gain comradery.  I felt desperate, upset and railroaded intentionally so I pulled the only card I could.  Telling them that I once was a State employee too that had a ton of power when working for a Judge and that people like them is what gave State employees a bad rap.  Still they refused to accept my application telling me to walk out the doors of the building and place it a night box.  Something I couldn't do because I had to bring original birth certificates with me for the application and they had to make copies of those before I could submit the application.  I told her I couldn't come back that I had to find respite care for Noah - that they had to understand that I could not just come back.  Still with the evil stare down and no communication she took both birth certificates made copies that took less than sixty seconds and took my application stamped it in, and that was the end of that.  That's all she had to do.  Likely a total of less than a minute of a clerk's time when they were on a power play.  The State of course I am sure will be in touch demanding more information to accompany the application for determination at a later time by mail.  I expect the road to be long and hard.  And it may or may no even work out in our favor.  But I have to try.  I must at all costs to my emotional and physical well-being continue to try. 

I left that office holding back any display massive frustration. Finally letting loose in tears that were freezing and chapping my face as I walked back to my car.   Wondering and yelling at God literally if it would be too much to ask for just a hand up - just a little help here.  I mean I'm working my fingers to the bone trying to dig us out of all these problematic situations.   It only takes one life altering event to change things.  This spiraling road could happen to any one.  A cancer diagnosis, a catastrophic car accident,  the birth of a child with a life-changing diagnosis.  None of us are exempt yet people walk around like they are.  With an attitude that they are now better than I will ever be.  In the eyes of others I am at the bottom of the human pile.  Seen as having no value.  My story could be your story.  It could be anyone's.  Yet the compassion is never there.  It's as if everyone thinks I don't matter.  But I still matter.  I still do.


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