Friday, January 20, 2017

Strength of The Banyan Tree

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In 1999, I had decided to gift myself with a college graduation gift.  Something that I worked all through college to save up for while working full time and attending college as a full-time student.  I had never been away from home, never been on an airplane, never ever broke away from my own personal comfort zone of what was familiar, easy and safe.  I booked a flight to Maui - for reasons to this day I can't even tell you.  Maui wasn't a life-long dream.  I wasn't running from or trying to escape anything.  It was almost as if I blindly pointed out a destination on a map and chose it.  An eight-hour flight later, with palms so sweaty that I thought I was going to literally fall out of the sky to an early death, I landed and was greeted by a lei of welcoming flowers, bright sunshine and a soft breeze. 

There were things I pushed and dared myself to do - like drive the road to Hana.  Which is an insane road, even for an experienced mountain driver like myself, but it took me to some of the most breath-taking destinations.  Black sand beaches, water that swelled red with shrimp, beautiful and peaceful cemeteries that I walked through, high cliffs and the ocean that I had never ever seen before.  The bluest of the blue that just went on for what looked like eternity.  I learned to love the stripped down version of myself there.  I went without make up, my naturally curly hair completely untamed, wild and free from products and hair accessories, my dress attire simple Hawaiian sundresses.  I had my first Mai Tai drink and went to a traditional Hawaiian Luau.  I did all the tourist kinds of things like a dinner boat ride, submarine exploration, and found myself emerged in a freak wave from the ocean while attempting to build a sandcastle in the sand like a small child.  I lost a flip flop, and the beach chair from the hotel that all went out to sea, and learned sometimes when your back is turned that you can get hit by the biggest wave when you least expect it.  

Yet, with all the things I did, it was that banyan tree in Lahania, Maui that perhaps gave me the biggest lesson of all.  It's this incredibly massive tree with branches that are just endless.  The tree's canopy spans a quarter-mile, but it's base perhaps the most intriguing.  Buddhists refer to it as the "tree of enlightenment.'  The banyan tree is majestic and strong and represents personal growth and wisdom.  Through life's experiences your roots get driven down deeper, and you become even stronger - stronger than you ever thought you could be when you were simply starting out as that small tiny seed. When I touched it, it was like the tree was schooling me.  I sat there in awe of it's enormity.  Yet, in hindsight I hadn't a clue what it was trying to tell me at the time - I just was allowing it to record it's message into my soul, so that I'd be able to replay what I needed at a later time.   
I couldn't have imagined or predicted at that time where my life would lead me.  I certainly wasn't given any warning or preview into the future, but the tree did tell me I'd have to be strong.  Oh, so strong.  That much I understood about that experience.  Perhaps for the average college graduate it would have been just a vacation, but for me it was building upon the foundation and strong roots that already existed within.  I came back both different and the appearingly the same.  But I've never left everything I felt or those lessons behind.  


There are countless times once you become a special needs parents that you have to exercise being unpopular.  Times when you have to have the bravery, courage and strength to be your child's advocate and champion in all things.  You cannot take the path of least resistance - even when you may want to.  Finding your footing the equivalent to realizing how deep your roots are planted and just how strong your branches are.   You can't look back on anything with regret, because the focus is always and forever the best interests of your child.  
It is often very difficult to find quality therapists - especially the older your child grows.  It's almost as if therapists prefer to wash their hands of children once they get to a certain age in childhood and express to parents that their child has no more potential to progress.  In reality the their jobs indeed do get harder, just as our jobs as parents get harder as they grow.  There is more lifting required, sometimes limbs stiffen more, children's over all tolerance may vary, and it's not as easy as it is to work with a three or four year old little cutie.  What I call therapist abandonment happens frequently and for a variety of reasons.  

I had such an abandonment today in fact.  In the course of four years Noah has gone through six speech therapists.  It's a type of therapy that simply doesn't have therapists that have a longevity of their profession.  Many leave and move onto jobs in public schools, or resume furthering their education, leave to become instructors, some have complete career changes - turn over for speech therapists is uniquely high - higher than both physical therapists and occupational therapists combined.   Finding a therapist - a good therapist that is skilled and proficient in AAC communication is very hard.  Most therapists may briefly touch on those things, but unless your child has a mild speech impediment, or needs to learn sign language your options for AAC therapists are super small.   Three years ago, Noah's then speech center no longer had an in-home therapist willing to drive to our area and we were transferred to a "sister company."  

It was evident that the our first therapist with the new agency was new both to her job and profession and lacked that employment spark and interest and made it known that the job was a stepping stone and resume builder for her attempts to further her education.  Half-way into our year with her she told me that Noah wasn't making significant progress and that it wasn't worth the investment of her time and asked me to invite the owner of the company to come along to one of Noah's sessions so she could show that Noah was making no progress.  I should have kicked her to the curb then for having little faith in my child and should have had the backbone then to speak up and tell her that it was indeed her shortcomings of knowing how to work with children an AAC devices, yet I consented to the meeting which years later turns out wasn't even the owner of the agency - in fact to this day I have no idea who her companion was that she was demonstrating that Noah had no capabilities in AAC communication to, even though he had and was using a device for some time. She eventually decided to pursue a master's degree in Georgia and I was relieved that I didn't really have to address her lack of confidence in Noah and his capabilities.  

You always hope you will get an upgrade when any therapist moves on to something else.  But my hopes were quickly dashed when her replacement worked at a local college as a speech pathologist instructor and made it known that she had little time for Noah.  In fact, I was lucky to see her once monthly, even though I know she continued to bill Medicaid for weekly visits and was thereby committing fraud.  She hated Luke, and demanded that I have him leave the home while Noah did therapy - something that was impossible.  Luke never caused any trouble but she did not appreciate his presence nor his interest as a sibling.  I got in the habit of asking my mother to come over to play with Luke in his bedroom to pacify her dislike for Noah's little brother and her unwillingness to allow him to simply watch his brother's therapy session.  I spent eight months asking her to do an evaluation and trial for a new speech device for Noah only to be met with continual excuses and resistance for ignoring my continual requests.  The final straw was when she called to tell me she had acquired PTSD because her neighbor's house had been broken into and she couldn't see Noah for two more weeks until she recovered from the stress.  I expressed my concerns to the company and at that time was met with understanding.  

A temporary therapist came into the home to conduct the evaluation for Noah, complete paperwork and submit referrals.  He was a rather impressive therapist and rare.  His eye to detail and willingness and techniques to draw out the very best in Noah was indeed inspiring.  Yet, sadly a therapist that didn't do home visits and we didn't have the ability to make the drive to him weekly.  He was patient, kind and understanding and even willing to come to the home multiple times to get the evaluation completed even when Noah fell critically ill last April and was out of commission with all therapies for three weeks.   He worked timely, his correspondence and communication with me was excellent and it was what any parent could have hoped for.   

We were put on a wait list of sorts for Noah's newly assigned therapist to complete school and move to Colorado.  I was cautiously optimistic.  I know that freshly graduated speech therapists can be either a blessing or a curse.  Sometimes they're so motivated to learn they succeed and even do dances around their well-seasoned co-workers, and sometimes they fall flat on going the distance and really learning their craft well.   I started to experience frustrations with the lack of ability to program and learn Noah's new device.  Which was causing me to download all of Noah's needs, learn the system on my own, and expect very little troubleshooting help or assistance from Noah's speech therapist.  Of course there were other little difficulties too, like the therapist repeatedly holding Noah's eye lids open when he felt that Noah was being lazy or tired or tickling him.  Something that you absolutely do not want to do to a child like Noah who has a severe sensory processing disorder. 

The agency's response of Noah's therapists lack of programming skills and knowledge continued to be reaching out to the manufacturer of the device instead for tips.  Noah's had his new device since July of 2016, yet still doesn't have any functioning mount for his wheelchair.  The agency attempted to make him one out of spare parts that turned out to be neither safe or secure for Noah or his device.  It could easily tip over and hit the ground if you so much breathed on it.  I asked the agency to help me troubleshoot with finding a workable mount - knowing that I would have to fully fund it out of pocket because of Medicaid's low reimbursement rate - but there were no suggestions or options presented.  So I'd spend nights after Noah went to bed into the early hours of the morning researching mounting options on the Internet looking at pictures and specifications to find viable options because I couldn't light Noah's speech therapist or agency to assist me.  I asked for a trial of a couple products that I felt might be a good mounting match, only for the agency to deflect responsibility onto Noah's DME who has no experience or contract with mounting agencies.  After two weeks time I hadn't heard back from anyone, so I coordinated trials on my own within 2 hours time.   

There is nothing worse than feeling like you're doing a therapists job and not getting paid for it.  I'll have to pay shipping costs both ways on both devices, submit a credit card to secure a deposit of sorts - and fill out applications on my own.  And I am sure the therapy center simply didn't want to incur the costs of trials for a client thereby trying to push responsibilities back onto Noah's DME instead. 

Yesterday, I outlined all these difficulties with the hopes that the agency would step up and say yeah we've kind of failed a bit and dropped the ball and we're willing to see what we can do better or how to make this better for you and Noah.  Yet, today the response email was we're dumping you as a client, here is a list of companies you can check out instead, and by the way we want our parts back that we lent you for Noah's "Frankenstein" mount.  I'm disappointed of course that was the response and the feelings of the agency, and I know that there are lots of other parents experiencing similar difficulties with the same agency because we all talk to each other - so these difficulties are not isolated to just Noah.  I would have hoped that they took my concerns seriously and didn't take a dismissive tone or attitude towards it all.  

Parents like me tend to stay in bad situations because we feel like we don't have a lot of options.  There are not many speech therapists experienced in AAC devices - and as such we're often willing to assume a bad therapist over no therapist.  But we're doing such disservice to our children when we do that - and to ourselves.  I deserve to have the kind of genuine help that I need, my child needs support and deserves to not be without a speech mount for now going on seven months because I can't light anyone's fire to care enough to get it right.  I don't deserve to have to ask for the company to come out and train me because the speech therapists are unwilling to learn the device well enough to know what they're doing. 

So, Noah is Speechless - (yes, find the humor in it) because we all need a little laugh to get through the hard parts.  But I'm going to pick up the pieces and find something better. I know I will - because I have faith that someone will go the distance for Noah.  Someone will be his champion, someone will care enough to be beyond awesome.  And so I wait for that next door to open.  But while I do, I take solace in the strong roots that continue to drive down even deeper.    

"From little seeds grow mighty trees."


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

Friday, January 6, 2017

Don't Be Mercurial

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It's a new year, where some people turn over a new leaf... and well others don't. 

It appears that it's going to continue to be the same song and dance from Noah's Medicaid and Children's Extensive Support Waiver (CES).  I do try to give them the benefit of the doubt - no correction - I have given them amble time to redeem themselves.  Yet the hole they dig and the divide they place on any type of functional parent/caseworker relationship just burns to the ground time and time again.   Eight years in to this - I'm just done being nice about it.  I'm no longer entertaining any more artificial interest in how my son is doing, fake chit chat to make me feel and think they're on my son's team, no more believing not one ounce of the fluff I'm fed to stall me in the pursuit of helping my child.  I don't do games and that is what this has become.

Right before Christmas I filed yet another appeal before the Administrative Law Courts.  That makes three hearings for me in the next forty-five days, and I have another 60 days to file the fourth.  And this is just the beginning of the year and all of these requests were from 2016.  Can you imagine the trail of denials and appeals hearings that I'm facing this year alone?

I filed the most recent appeal just prior to Christmas.  Really the documentation and exhibits so blaring obvious that Noah's Community Centered Board, either has no real understanding of the State's policies, rules and regulations, or they are simply being spiteful.  My guess is likely both, but perhaps more the latter.
December 27th, Noah's caseworker called to say after receiving my Motion that was submitted to the Court of Appeals that they had a change of heart and realized they entered the denial in error.  She asked a handful of questions; how did I fund these requests in the past for Noah on our own and why were these items requested over other potential options.

I answered in honesty because that's the only way I know how to be.  God made me a lot of things but a liar was never one of them.  I explained that all these years we've fundraised for help.  Noah's maternal grandmother has done all that she's been able to in order to help when she was employed, even giving her severance pay to help Noah at they very last of her available resources, we've looked for foundations and grants to assist. It's not like parents like us have any other choice other than to ask for help from foundations, grants, and fundrasisers.  The costs of raising a child like Noah out of pocket can be more than a mortgage payment each month - especially when the State is in cost savings mode and doing their very best to withhold funding from your child.

She said that was all that she needed and that one of the missing supervisors from the review team would be in the following day to sign off on the approval and reverse the previous denial.  She also was confident that Noah's approval for these requests would come out of the 2016 CES Cap.  I was rather relieved because let's face it appeals hearings take up a lot of my time, and the Court's time when it's really unnecessary to do so for something that should be easily approved.

Less than twenty-four ours later on December 28th, that same caseworker calls to say, that they had changed their minds again and were not going to reverse their denials on either item.  Kind of like the joke is on you...

Stunned I'm like dealing with a Bi-Polar agency - that just can't get it's shit together.  They have the rational that a floor protector that prevents urine, vomit, acid reflux and Noah's drool from soaking through to the carpet or pooling on tile or laminate flooring is considered "carpet" and thereby an uncovered benefit.   They clearly don't understand the definition of carpet.   Even after providing a detailed letter from the manufacturer on exactly how different his product is from carpet that is permanently fixated to the floor, that you can neither put in the washer or dryer and that doesn't repel things like vomit, drool, urine, acid-reflux.  

A $100 Wedge pillow was also requested.  Let's just focus on that price tag for a moment.  One-hundred dollars.  A lot - but not a lot when it comes to special needs price tags.  Most adaptive equipment for Noah starts in the thousands of dollar range and I'm not exaggerating.  Any special needs parent will confirm that awful prices that are attached to things our children need.  

My mother and I found it by chance at Bed Bath & Beyond.  We felt it in the store, seen the height of it, and said I think this would just work for Noah beautifully.  We came home consulted with Noah's therapist who also agreed it was perfect for his needs.  Because Noah has a lot of sensory issues good adaptive equipment matches can be a challenge. It was a win finding a typical item that would work for Noah.  Since typical items neither have a DME distributor or a Medicaid Code they have to be sought out through Noah's Medicaid CES Waiver.  The Waiver covers items that Medicaid doesn't (or so is the theory behind the Waiver).  His CCB/Waiver denied it on the basis that it has a Medicaid code.  Even though I provided a letter from his DME representative that states otherwise and confirms what I am telling them to be true.  They insist they want to provide a medical grade wedge pillow, that will be hundreds of dollars more, have me seek that through traditional Medicaid, and then the Waiver will hire someone - a personal seamstress to make a custom cover for it that might be agreeable for Noah's sensory challenges.  Because that all sounds so much more inexpensive and uncomplicated than just purchasing a simple one-hundred dollar wedge pillow off of Amazon right? 

So, after telling me they hadn't changed their minds at afterall, they said they needed more time to investigate their options based upon me telling them that I had received past fundraising and foundation help for items such as these in the past and then maybe they'd reconsider once again.  Perhaps they were trying to find a foundation that would assist Noah so the State wasn't obligated to.  They after all do their very best to retain as much funding as they can rather than allow it to assist the very children it's designed to.  They also wanted to do research and call around and see how other CCB's handled requests of a similar nature.  

Today I received another email that they are certain now that they won't change their minds and that the denial is firm.  I suppose this is their declaration that their wishy-washy behavior has come to an end.  So now we face an appeal on these two items, with a warning that should I win, they'll simply continue to file Exception to Initial Decisions which makes the Appellate process moot.  

Yes - can you believe it that the very agency that has the power to deny something also has the power to reverse anything a Judge says?  True.  It doesn't go back before a Supreme Court Judge or stay in the Judicial System in some way.  It goes back to the State Department of Health Care Policy and Financing and they can say so what the Judge reversed the denial - we want it to remain a denial - and when that happens my friends - it's pretty much game over. 

With the exception that a family can file the matter into District Court and re-challenge the State.  Something I think they aren't prepared for me to do - but I'm so tired of being jacked around that it's likely time to do just that. Until they are penalized for their naughty behavior and called out for their incredibly unfair practices and tactics then this type of thing is going to go on and on until the end of time. 

Who knows why they can't pick a side of the fence and stay on it.  It could be that I talk a lot about my grievances quite openly and in this circle of advocacy you never really know who's team anyone is on.  You may think you've got someone in your corner and confide in them only to realize that they're playing devil's advocate instead.  It's also likely a combination of continued retribution and retaliation for me calling them put publicly on local television and trying to draw everyone's attention to the blatant mishandling of State funding that is supposed to be set aside for children like Noah.  The world will only turn the other cheek for so long.  And as more parents bravely and courageously step up and speak up about what is happening the more it points the finger right at them for literally stealing from these children.

And let's not forget Conflict-Free Management.  If you haven't heard of it:

"Pursuant to authority provided by 1915(c) of the Social Security Act, the Department has established contractual agreements about services and supports provided to eligible individuals with Intellectual and/or Developmental Disabilities. Commonly called Medicaid Waivers, the federal government, through the federal Centers for Medicare and Medicaid Services (CMS), provides approximately 50% of the total funding for these Medicaid Waiver services. The federal Centers for Medicare & Medicaid Services passed a final rule (42 CFR § 441.301(c)(1)(vi)) in March 2014 requiring separation of case management and direct services.  Colorado must comply with this rule to continue receiving these funds."  It's 2017 and they are still not compliant with Federal Law.

Self-policing is a conflict of interest, as well as well as holding true to the definition: “real or seeming incompatibility between one's private interests and one's public or fiduciary duties."

The State hides behind their lack of compliance saying it would be too disruptive to comply. They instead think that they can stay out of compliance by offering what they refer to as "extensive conflict of interest mitigation controls," like giving families "person centered" control over providers.  But let's be clear that the providers they offer to us are still contracted, limited and very much under CCB control.

So where does all this leave Noah?  Kind of stranded.  He has a list of things he needs and I mean the list is growing longer.  I don't really know where to go from here.  The first line of financial defense should be his Medicaid and Waiver funding.  But they are putting families like ours in a position of tremendous financial debt for out of pocket medical, therapy and equipment costs that they continue to deny.  And then when they're questioned about where all the unused money goes they say quick look over there it's a bird flying... look at the bird it's so much more interesting than anything that we're doing under the table.

I continue to file appeals, because that is the only way to document the absurdity of what is happening and can only hope that eventually someone in a position of power takes notice.



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