Sunday, August 20, 2017

When God is Quiet

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I was alone most of the day yesterday.  While that might sound like a dream come true when you lead a rather exhausting life that comes along with being a special needs parent, I assure you it's not.  Being alone with your thoughts isn't always wonderful.  It gives me extra time to think about the things far beyond my control, it gives me more minutes to marinate in sad and difficult feelings, and it seems to solidify the knowledge that I'm truly alone in all this.  God has been exceptionally quiet in all this for sometime now.  As I continue to pray for answers on how to provide the very best life possible for the miracle he entrusted me with.  Yet, He continues to ask of me that I show up each day regardless of the hurdles, road blocks and difficulties that continually lay ahead.  And I do because I have faith, hope and understanding that everything is in His time, not mine.  Yet, none of that changes the struggles that are before me in order to help Noah.

As I was driving to my first errand of the day to purchase more frozen cheesecake for Noah, which has become his evening staple after every dinner, I seen people alongside the road holding various signs.  Some over the recent racial tensions over the Confederate Flag, some over our various political issues, and some condemning terrorist attacks.  All of course receiving more response from passerbys and honks from cars than the man on the street with his sign and pleas for help in order to feed his family.  The world is so distracted that it fails to notice the smallest of struggles.  We can't see what is directly in front of us.

It's much like that for the special needs community too.  Our challenges and struggles are easy to forget, our voices get lost in all the outside noise.  We're out of sight out of mind.

I get to the parking lot of Sam's Club to buy Noah's cheesecake as I watch people fight over parking spaces.  All the while my soul wishes to scream to both parties that they should be so thankful that they were gifted with the blessing of the ability to walk no matter if it were two parking spaces distances longer to the door.  A physical ability my Noah will never be able to do.  Another woman in a hurry pushed me and my cart aside in her hustle, never looking back to see if I was okay or to say sorry that she bumped into me so aggressively.   I stayed quiet nursing my leg that was bruised in the incident, although my feelings were likely bruised more because I had hoped for that "so sorry, I didn't mean to,"  which would have made all the difference.  But instead it rather added to the theme of the day that I was feeling rather run over by the world - I now simply have a bruise to prove it, I suppose.

I got Noah his three cheesecakes and two packages of paper towel since Noah's sensory issues have been on overload and I'm going through paper towel these days like water trying to mop up his gagging and vomit episodes at home.  I can't even change his diaper these days without him gagging over the smell no matter how fast I do it, he always throws up on me.  If he even feels or hears the plastic ruffling of a chux that will even cause it.  I paid and left, I sat in my car briefly just watching people.  Everyone in a such hurry.  Like little ants on a mission but do they even know what that mission is?

I stopped by Natural Grocers on the way home.  I have made a habit now taking only one reusable bag into the store and filling it instead of a grocery cart.  I've convinced myself that whatever I can fit into one bag I can afford, no matter how heavy that bag gets or how much I try to stuff in it, that seems to be my goal.  I picked up odds and ends. I was rather directionless and without a clear mental note of the things I would need to get through the week.  Yet I filled that bag with things I anticipated we would need; Greek Yogurt to make Sunday morning pancakes fluffy, bread so I could make grilled cheese, bacon, eggs, and cheese.

I couldn't resist the urge to go next door to Two Rivers coffee shop. While the idea of coffee sounded good, what I really wanted was to see the heart that they do on top out of the creamer so that I could remember I was in some way loved.  Even if, just by a cup of coffee.  I stared at that perfectly decorated and heart adorned coffee for a few minutes before I was willing to put a lid on it and drink it.   I just kind of looked at it in awe.  It was heavenly and my only regret is I didn't get two because well, you can neither have enough love or enough coffee.

My last stop was to Kohl's to find my mother a birthday gift with the Kohl's cash I had been staving.  I'm not even sure how I got there other than the car was on auto pilot.  My mind heavy with the things I still need to accomplish; filling out SSI forms, dealing with denials, calling for a quote on something needs, reaching out to equipment vendors, trying not to be disappointed that Noah's fundraiser is going nowhere, the laundry, fixing dinner, washing Noah's food soaked chair, bathing two kids, cleaning up the kitchen, wiping down Noah's mats....

There is no shut off button for my mind.  It races as if it's trying to constantly troubleshoot.  And in the middle of it all I of course stop to pause and say where are you God?  You're still so quiet.  Why are you being so quiet?

I was really lucky and found something right away that I think my mother will adore.  I'd tell you what it is but she'll likely read this blog (as she faithfully does), and that would give away the surprise.  I felt like I found a really great gift.  I was walking to the car feeling really like a non-event - insignificant, dull and without any real importance except to my children.  And then I looked up and seen this note attached to Noah's magnet on the side of the car.  And it read:
"You're Right!  Amen.  May God be with you always!" 

I just cried right there in the parking lot, without really caring about what people thought.  Finally God said something.  The note had no name or identifying information to it.  And I'll likely never know the person who left it.  But if you're out there and maybe reading this someday - I want to tell you thank you.  Thank you for having the courage to think of us in such a beautiful way. Thank you for lifting my spirits although there was no way you could have known the emotional load I've been carrying.  You ended my day with such grace and love, and something so small really means so much.  I will save that note in Noah's hope chest, and will remember it always


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

Don't Rock the Boat

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The couple of years have been particularly challenging.  I suppose it's like the plot twist in special needs parenting.  Over two years ago I started to ruffle feathers with my knowledge of unfair practices and mishandling of tax payer dollars designed to assist those with special needs, abuses of discretion and non-profit organizations and third party agencies who are managing Medicaid dollars.   My parent advocacy role and efforts led me to information that is concerning.  Noah's accounting records didn't add up, his Community Centered Board was reporting he was using much more than he ever had the chance of receiving, they refused to change their accounting records despite my requests to accurately reflect Noah's true expenditures. (Now I never see financial reports for Noah).  I challenged practices like CCB's (who manage Medicaid Funded Waivers) that taking a 3.5 percent out of our children's funding for any service or item they approved seemed to be a shady practice (although legal until legislation forces it to be otherwise), and putting it in their pockets.  It's the "cost of doing business they say."  So your child never has the potential of ever using a full CES Cap out of the waiver since they pocket a portion for themselves.  I walked into this meeting with a State representative and the Executive Director from a well known local advocacy group and a multi-page agenda - aimed to make things better for Noah and for other families.  Instead what I wound up doing was identifying myself as a "problem parent,"  who knew way too much about what was happening under the rug.

While I was assured the discussion at the meeting would have no repercussion for Noah - it most certainly did and within less than a week he was given his first denial in the form of an email with a "gotcha last" tone in the mail from the very person we conducted that meeting with.   Multiple meetings later with various representatives of the State's Executive Team that manages Medicaid,  Noah then found himself with a three person panel unique just to him and no other child in the State to review all of his requests.  The team unanimously enters denials now on Noah's behalf.

A year later I grew even less popular, finding myself just by chance as front page news of the local paper, and on a news television station discussing the mishandling of funds and supporting a legislative bill called SB-38.  A transparency bill as we called it that would force the State and CCB agencies to undergo public audits to document where all the money actually goes that doesn't come to our kids... one CCB got their hand openly caught in the cookie jar for personal spending.  Although I suspect all twenty CCB's across the State also have their own undiscovered cookie jars.  Of course within less than twenty minutes after the news stations started calling Noah's CCB for comment, I received a phone message that I still have saved to this day stating that anything and everything - even "anticipated" items that Noah might need would be denied.  While SB-38 was since finalized and passed and now even includes a confidentiality clause for parents like me coming forward so they aren't identified and targeted like I have been, it is now a wait and see if any CCB will willingly comply with it.  One must raise an eyebrow as to why the State was adamant about parent identification.

I counted the other day the number of appeals I've filed for all of Noah's denials.  Eight of them in the last two years, receiving a 9th denial in the mail Monday.  This doesn't include the things that were denied that I simply didn't have the fight drive to file an appeal on, or denials that had a very grey area - like the denial to fund Noah's orthotic shoes.  EPSDT's code only reimburses them at $43.  They cost nearly $400, his CCB refused to pick up the tab saying EPSDT should fund them.  A war on funding categories too low to help families like mine both agencies just point fingers back and forth at each other until ultimately it becomes an out of pocket cost.  I knew an Administrative Judge could do no more for me should I had filed an appeal because his or her hands would have been tied in that case.  A Judge could have done nothing about the low reimbursement category rate for othotic shoes, no more than he or she could force Noah's CCB to pick up the difference.  I knew I had no real legal leg to stand on - even though it sucked all the same and that it was a medical necessity.

But for all the cases I believed a Judge could hold their feet to the fire and see that these requests were really medically necessary and within the scope of their power to reverse an unfair denial, I filed an appeal.  The cases drag out sometimes for a year or more - especially if the State files motions for continuance with the excuse they can't get their evidence packet against you done in a timely manner.  I prevail in all of them.  And various Administrative Law Judges continue to rule in Noah's favor.  Yet, the State has the power to overturn any Judge's ruling and they continue to do just that.  They habitually file something called an Exception to Initial Decision and when they do that it goes back to the very agency that denied it in the first place.  It doesn't matter what your reply is - they've already put you in check mate.  And they'll sit on it weeks to months before mailing you their Final Decision which always reverses the appellate Judge's decision.  Crazy that they can do that right?  Renders the appellate process moot.

No one yet though seems to have it on their radar that they need to take this power away from the State.  Once a matter enters in a Court setting it should remain there.  And a Judge's ruling should stand to be significant. 

For years I've shown and documented what has been happening to Noah.  What I believe is direct retaliation and retribution for speaking out.  Something the State and Noah's CCB do not dispute nor disagree with on any Court transcript.  They are using me as an example to show others what happens if you come forward, and to punish me at the same time for doing so.  I finally got the attention of Colorado Disability Law Attorneys, who agreed to take one of Noah's appeal reversals and hopefully a second one as well.  Disability attorneys are no obligated to take all cases, and certainly I grew nervous when I heard over the phone "we feel you're fully capable of handling things."  And yes, while I'm a strong parent and am not the norm because I did work in District Court for so many years before Noah's birth, even the strongest still need help.   Disability law attorney services come at no cost I still have to pay a filing fee of approximately $224 each time a case is filed.  I've signed promissory notes that I now owe in legal fees.  But I'm so desperate for the help I had no other choice.   This forces the matter back to District Court - in a Court setting where it should have always remained.  But legal cases are slow and we could be at this for another year or so before final resolution, all the meanwhile Noah continues to go without the medically necessary things he needs for his quality of life.

Now I find myself researching the options of filing a Civil Rights Violation and Medicaid Fraud Complaints because I don't know how to get this cycle to stop.  The State is showing no signs of easing up on me or assisting Noah who has a high level of needs due to the severity of his disability.  No matter who I've talked to with it be political representatives, advocacy groups, the State itself - nothing changes.  Legislators say their "hands are tied," State officials say "they'll look into it.," Advocacy agencies - while yes they care haven't been able to find away around this either for me.

It shouldn't have to be this hard.  Parents like me shouldn't have to fight like this. 


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

Saturday, August 5, 2017

They Don't Make a Pill For This

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Empathy is a dying emotion that we all should possess.  Society is developing into a don't bother me realm, and one in which isn't going to be very sympathetic or share a listening ear when you try to be expressive of the challenges that come along with special needs parenting.   There is a pill for that they say.  Go see a doctor - they can fix anxiety and depression and all sorts of things...

I assure you there isn't a pill that can fix the roller coaster of emotions that come along with special needs parenting.  The assumption is that naturally if you have a child with special needs then perhaps you too either have mental illness or will develop mental health illness as a result.  You'll be plastered with self-care articles, friends who'd rather tell you find a pill for it than embrace you in a hug, sit with you and coffee while you cry, a stranger who sees your distress and offers to help you pick up the pieces and become your hero.  We're in a very distant type of age.  One where social media has over taken any real sense of simple face to face interactions and relationships.  Yet countless special needs parent sit in this empty zone.  One where they are criticized at the very slightest inclination that they aren't bearing all the hardships and challenges with anything but a smile on their face and a skip in their step.
What people fail to realize is that our children aren't the problem.  In fact, that is really where our greatest joy grows from.  We pour ourselves into our children, their happiness, and the love that they bring into our lives.  It's all the outside chaos that could be changed - that needs to be fixed, that could be so different that is the root cause of our special needs distress.  It is all the complicated emails, it is the system and all the government agencies we have to deal with, bad news that comes daily in the mail, insurance denials, forms to fill out, endless appointments coming our way, trying to digest and get our head around yet another diagnosis to add to the growing list that defines our child on paper, financial hurdles, and the out of pocket expenses without the means to pay for them.  The constant feeling that well you're continually losing on all fronts of your life because you're giving every ounce of yourself to fight for the needs of your child.

There isn't a pill you can swallow that will justify the the fact that Medicaid has overturned another Administrative Law Judge who ruled that a request was a medical necessity and Medicaid laughs in the face of any Court decision... there is no pill you can take to deal with having to report wages to SSI monthly, or fight overpayment demands, there is no pill you can take that will help you figure out where to pull money out of thin air for uninsured medical costs, or a pill that can make you forget about how full your calendar is with appointments, no pill you can swallow that will lessen the pain or stress of any of it.  

The cure lies in help that isn't there.  Legislative changes that make it easier for families like mine to actually go before a Judge and force Medicaid to comply with a favorable ruling; better employees that sit behind the Social Security desks that both speak fluent English and know how to do basic math and not be four months behind on calculating your household income; caseworkers that don't sit on your applications and requests for weeks or months before making a determination, durable medical equipment providers that care about your child's well being far beyond being a financial figure to them and their company; State governments that don't do everything in their power to try to block you from you child's medically necessary needs for a quality of life; friends and family who want to be there with you in the trenches - and I do mean the trenches.   In the thick of the bad and the good, who will cradle you in the hard times and who will want to help restore your faith that things will be brighter and better tomorrow.  The cure really lies in that we need more help that we aren't getting.  The system is failing us, society is failing us, and our friends and families are failing us... there simply isn't a pill for that. 


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