Sunday, March 26, 2017

Crashing a Public Women's Restroom in Disability Style

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We recently traveled with Noah, it's not easy.  In fact, although I'd like to say that perhaps we gain more skills on how to do it better each time, Noah throws us a new traveling curve ball because he likes to be a tad unpredictable. Just when I think I've found away his take off and landing sensory vomiting episodes with Motion Ease, a Vomit bag, and a bib to best protect his non-FAA approved Car seat (yes I'm a rule breaker for my child), from being covered in a sensory overload evidence, he'll do something he's never done before - just to keep us on our toes I'm sure.

I took Luke to the bathroom at the Orlando International Airport.  I couldn't find a family restroom the best that I tried for Noah.  I refuse to place him on a bathroom dirty floor to change him - I just can't do it.  I can't.  So I recline his wheelchair the best I can and it takes both his Dad and I to change him one lifts the bum, one switches out the old with the new, one holds him so he doesn't flop out, one pulls his pants up, one hollers to Luke to just stand there and not touch anything that isn't sanitary.... you get the idea.  It's not easy, nor a picnic or fun.  And it could be so much better if proper Changing Spaces were in place that allowed us to make this easier and change Noah with some dignity.  But until the world catches up with our needs we're doing the best we can.

While taking Luke to the bathroom I realized that the handicapped stall in the women's restroom was unusually awesome and rather perfect for our changing needs for Noah.  It was huge.  And by huge I mean had it's own personal sink in it, room to turn around, it probably could have accommodated two wheelchairs to be honest.  It would have made a decent family bathroom but instead was tucked away inside the women's public restroom.   I went back to Chris who was sitting at a Ruby Tuesday's table feeding Noah prior to our flight.  Told him I found a bathroom for Noah - but it was inside the women's restroom.
He looked at me like you're really going to attempt to change Noah all by yourself?  Until I gave him that look that was like "nope, buddy that's not what I had in mind."  Without me even saying a word, he's like "oh hell no, I can't go into a women's restroom."  I said, "we have to do this." 

He shook his head in disbelief of what I was proposing. I wanted him to just waltz in a public women's restroom.  He looked at me and said "are you trying to get me arrested, so we can't go home?"  Funny as that may have been (although I would have put up the bail money if needed), I was quite serious.  He was going in that bathroom and helping me change our 8 year old wheelchair bound child even if I had to push him the whole way into that stall.   No, wasn't an option. 

First I thought, well perhaps I should announce my husband's presence to all the ladies in there. But then I was like nope.  Advanced warning wasn't needed.  We're a family, he's not a bathroom threat to anyone.   Chris, walked behind me like a shrinking violet.  I kept telling him to come on already.  He walked like a sloth, dragging his feet in utter terror.   I was somewhat amused with his extreme discomfort about the situation.  And even more amused by the looks we received by other women in the bathroom.  I much didn't care.  I was standing my ground and marching into bathroom battle.  Some jaws wide open, some pretending to look away but then glancing my direction.  Little girls not even so much as thinking twice, because at young tender ages they haven't yet developed a sense of discrimination or dislike for differences yet.  Chris hustled into hiding into the large disability stall - he stood against the wall looking at me like he couldn't believe I was forcing him to do this.   I ushered Luke into the stall told him to stay in a corner with his hands clasped in in from of him and not to touch anything with germs while we worked on helping Noah.  Luke follows directions as if I put him through military school at age one.  I had no worries that he'd leave his corner germ-free post., which was great because I could place all my focus on changing Noah with the help of his Dad.

Noah's diaper change was a little bit messier than we had anticipated it would be, which always presents an extra layered challenge trying to do this while he remains tilted in a wheelchair.  It sucks really.  I won't play it up as anything less.  But the main goal is not to fumble our precious Noah onto the floor when we do this.  It took a bit longer to change him, but was really thankful for the sink inside the stall that certainly helped the situation.  Chris did his best to whisper as if was trying not to give away his location.  I laughed under my breath likely about the challenge of changing Noah in this way and having my husband backed against a tremendously uncomfortable situation.  If you can't laugh about it all, you'd lose your mind.  Laughter is important.  Never fail to laugh about the hard things.  I promise you it helps.

After Noah had been taken care of, and Luke was given permission to come out of his germ free corner, Chris looked at me for direction.  Part of me told him he should march out first just because I wanted to see everyone's reaction.  There isn't much like true shock value of a guy in a bathroom with his disabled child and family.  What fun right?  People need to see more of this - really they do.  They need to see how hard our reality is.  Why hide it from everyone?  Perhaps if I showed them enough things would get easier for us?  Or not -

But I took one for the team and just told him to follow me out.  The look in his eyes said could you please at least hurry me out?  It is honestly really sad that we've placed so much gender stigma on bathroom situations.   We all have to use one - and we all have different body parts.  So what?  I've used plenty of men's bathrooms at events and concerts back in the day when the women's bathroom was line was to eternity.  And the men were really great about it.  Wasn't there picking up a date (nor am I interested in looking at anything I shouldn't be)- I just had to pee really badly.   Will Noah's daddy ever get over the shyness? I doubt it.  Bless his heart he's just sweet in that way.  And cares a bit too much about what people think.  However, I have full faith in him that if I wasn't around he'd have the courage to go the distance for Noah and entering a women's bathroom if need be to get to the only and best changing location for Noah on his own.   He could do it, if the occasion required it.  He'd do anything for Noah, that much I know. 

That's why I chuckle whenever I see people have bathroom gender debates.  You all haven't a clue.  None, zip, nada.  Everyone wants to view things as black and white, and there are so many shades of grey in life.  We're so quick to judge, point a finger, and increase someone else's hardships and difficulties that we lack tolerance, patience, understanding and above all else kindness. 

Luckily for all the ladies that were present they didn't utter a word, although mind you I was ready and most certainly would have put anyone in their place that dared to question or say something about my husband entering a women's bathroom to help me with our severely disabled child.  I dared them to do so and shot back glances in the direction of all those that looked like they even might think about going there.  So the next time ladies that you see a guy in a bathroom - especially with a young child or one that is disabled.  Cut him a break, not all daddies are entering a bathroom because you think they're a predator.  Just calm down.  Do you bathroom business and move on. 

And for all of you that continue to remain uncomfortable with the idea that I'm now forcing Noah's daddy to enter women's restrooms if need be - then please fully support Changing Spaces worldwide to give us adequate changing space for Noah, so we don't have to make you feel uneasy about our situation.  Same with the dudes - if I think your bathroom area is equipped with what I need... I'm going in... wink wink. 


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

Thursday, March 16, 2017

I Can Touch Myself

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For all of that clicked on this because you thought the title was naughty, I assure you this is a completely G-Rated Post.  Noah has been doing a lot of alternative therapies since he was thirteen months old.  We still have mixed some of his therapies with traditional therapies at times.  But Noah has always found more success and more contentment with what insurance companies deem "alternative therapies."  Also really known as therapies Medicaid refuses to pay for.   This of course throughout the years has contributed to the financial hardships of not just our family but all families like ours.   However, it's kind of like those credit card commercials you see on TV; Therapy $5,000, Gas to get to therapy $500, watching your child do something for the first time?  Priceless.

No, for real the feeling is quite breathtaking when it comes to witnessing your child do something that he or she could never do the day before especially years after they were physically supposed to be able to meet such a milestone.  We've been doing a therapy for a couple years called MNRI with Noah (The Masgutova Method of Neuro-Sensory-Motor Reflex Integration), which has hugely benefited Noah's life.   We added it to the line up of Acupuncture, Hippotherapy, Warm Water, ABM/Feldenkrais, Cranial Sacral, Conductive Education and the other long list of out of pocket therapies throughout the years for Noah.  And nope Medicaid doesn't touch any of it. 

It's been my dream to get Noah to the MNRI center in Florida for years, but financially I don't think we'll ever make it there.  Most camps run about 8K-9K a session and Noah would need go multiple times.  But we're so pleased with the progress he's made with his local MNRI practitioner.  Noah adores her - they are close friends which is great when Noah forms a bond with therapists that forms into a close friendship.  Noah's been having lots of reflex break through lately.  Alternative therapies are like that - it's like one day the wires in Noah's brain connect and re-wire themselves and suddenly something he couldn't do yesterday he is doing today.  The brain is an amazing thing.  And Noah's continues to learn and adapt ways around his global brain damage. 

It was like almost overnight and Noah went from not being able to get his hands to his face to being able to swipe and touch his face all the time.  This of course is posing new problems like him scratching the bridge of his nose and chin, and now that he is able to reach and touch his face he's more susceptible to germs if someone touches his hands and he then touches his face.  In fact, for the earlier this year, Noah has been battled a cold that started with him that he so kindly shared with the rest of the family.  My best guess is that we were doing interviews for a new speech therapist and someone physically touched him and transferred a germ to him (even though I have a hand washing policy upon entry) that is voided if a person decides to chew a finger nail or rub their nose after they wash their hands and then come in contact with Noah.  It really then defeats the purpose of my hand washing policy.

While I'm ecstatic that Noah can now touch his face, I'm of course a tad nervous about this new challenge.  People generally like to touch Noah's hands oddly enough when they do touch him.  I suppose it's natural instinct to touch a special needs child on the hands rather than patting them on the head like a pet or something.  Although really I wish that people recognized you should NEVER touch a special needs child without explicit permission and/or invitation from the parents.  In Noah's case germ risks combined with a severe sensory processing disorder does not make him a favorable candidate for unwanted touching. 

So in true mama bear style now that Noah can touch himself, I searched out little warning tags to plaster all over Noah's wheelchairs or adaptive equipment to serve as a do not touch the merchandise reminder.  I know people are likely to think I'm crazy.  And I'm more than okay with that.  It's my job to protect Noah in every way I can - including from any unwanted germ transfers.  It's not easy on him to be sick - this last time it required three doctor's visits and multiple pulse ox checks, and tons of medications.
I found these great signs on Etsy and Kind Sign Inc. that will put people on notice (or so I hope) to remind people touching Noah isn't a good idea.  Has it helped?  No not so much, since putting them on Noah's wheelchairs his legs have been rubbed, his head continues to be petted like he's a small puppy, and his hands picked up and caressed by strangers in parking lots.  And it happens so fast I can turn my back for a second to get something from under his wheelchair...  and the touching is already happening.  But maybe it's going to decrease the amount touchy business - I don't know that there is much more I can do.


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

Wednesday, February 22, 2017

Bath Time Just Got a Lot More Fun: Introducing the Splashy by Firefly!

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Firefly debuted it's fifth piece of adapted equipment in it's expanding line of equipment geared to offer children with disabilities aimed to provide greater opportunities of family participation.  The Splashy, a new bath seat, follows a trail of successful equipment; the GoToSeat, Upsee, PlayPak and Scooot.   The Splashy launched January 31st, and special needs parents lined up to purchase the latest addition in the Firefly line.

The Splashy retailing at $399.00 USA dollars (including shipping and handling costs), makes it a favorable choice for many parents who face a multitude of out of pocket medical, therapy and equipment costs.  There was much speculation and buzz surrounding Firefly's choice in pricing and the special needs community was pleasantly surprised when the price of the Splashy was announced.  Firefly maintains a commitment to make special needs equipment as affordable as possible for families.  

What makes the Splashy so unique from competitor models in bath seats, is it's simplistic design, it's ability to be universal to meet the variety of multiple different postural needs that exist from child to child, it's ability to be extremely travel friendly, light weight, sits flush with the bath tub floor to allow a child to be completely submerged from the waist down, and of course most importantly offering children with special needs a typical bath time experience full of fun, opportunity and family participation.

Noah received his Splashy a few days after the launch - shipping continues to be fast and timely with Firefly and items are dispatched quickly.  In true Firefly style, the box came printed with the Firefly's logo and the Splashy advertisement on the box making it an easily identifiable fun package to receive.  I decided when I took it out of the box that I was going to put it together without even glancing at the provided instructions.  I wanted to know exactly how simple or complicated the bath chair was going to be.  It came in four sections, the back, the bottom, the base, and harness and supports.  The back and bottom thread together easily and snap in place, the back and bottom slide into place in glider sections for the back and bottom to provide support.

I was able to put it together in less than five minutes.  Extremely simple.  The Splashy is designed to accommodate children from age 1 through age 8.  I was skeptical of how Firefly would be able to essentially build a one size fits all bath seat to reduce the costs for special needs parents having to replace a bath seat as a child grows.  It has bubble cut out outs all over the Splashy in order to make it customizable to the size both in width and height to meet each individual child's needs.  While the recommended age limit is 8, Noah can easily be in this bath seat for a few years longer.  The weight limit is 30kg or approximately 66lbs.  Most children like Noah tend to be on a lower weight growth chart and it is typical for them to grow out of equipment due to height before weight limits become a factor.
The Splashy currently comes with a standard 4 bumper guards, however children like Noah often require extra supports.  Firefly will be providing the option to purchase extra bumper guards for parents wishing to obtain more than four bumper guards in March of 2017.  Something, I'm really excited about as I think that will be a wonderful option for families wishing to provide a little extra lateral, head or hip support.

The Splashy can convert from a five point harness to a 3 point harness depending upon the child's needs.  It has 26 different recline options, that are small groves in the back of the chair.  I am using the Splashy on the lowest reclined setting, which still keeps Noah's head well above the water line. 

One of the cutest features is that the Splashy comes with a little rubber ducky which I think is a sweet feature that Firefly has included a toy as a part of the packaging of this bath chair.  I really like to see special needs equipment vendors adding little touches to their products that make children feel included, important and thought of.  It makes the child feel as if they received a gift, not just a device that is required for their safety during bathing.  I must say that our son adored the little ducky and did his best to use his hands to chase it as it went around and around in our jetted tub.
I like that Firefly continues to design products that have playful colors and the ability to mix and match depending upon the family's color preferences.  Most special needs equipment is pretty standardized in colors and often times not tailored to the child's personality, the home's color schemes, or the family's wishes.  I love that Firefly is giving parents options to chose from.

I've received a lot of questions from other parents about the Splashy - below is a Q&A:

Q:  Is the Splashy covered by insurance?
A:  Not at the present time, but Firefly is working on that at this very moment and hopefully in the near future it will be.

Q: Does it have a headrest?
A:  It has bumper pads that you can position to be a head rest either on the sides or behind the back of the head.

Q:  How lightweight is it?
A:  It is likely the lightest piece of equipment we own.  Noah's little brother who is five can carry it around independently. 

Q:  How comfortable is the material for children who have sensory challenges?
A:  The material feels a bit like plastic covered foam, the Splashy logo however is embossed in the lower back which provides for a slight raised texture.  That may be problematic for some children, but could be easily rectified by placing a small wash cloth behind the child's back.   The harnesses are a soft padded plastic and when wet, does not seem to cause any skin irritation.
Q:  How easy is it to clean?
A:  It's very easy to clean and I clean ours with mild, plant-based, non-toxic cleaners.

Q:  How sturdy is it for children with high tone?
A:  Noah has extremely high tone and the device is very stable, it does not tip to either side nor does and recline settings in the back are very strong.

Q:  Can you use the Splashy as a floor sitter like the GoToSeat?
A:  Yes, technically you could use the Splashy as an activity floor sitter, however the Splashy cannot be strapped into a chair and would have to remain on the floor base to be functional.

Q:  How easily does it fit into a suitcase?
A:  It fits into a standard sized suitcase, slightly bigger than carry-on size, so you would have to check it at the gate if you were traveling by airplane.

Conclusions & Ratings:

I would give the Splashy a 4 out of 5 stars.  I do wish it had a tad bit more recline ability and a slightly wider head rest area. And the suction cups aren't dependable in the bottom of our textured tub, but the product does not lift due to the weight of the child.   I also continue to wish for a storage/travel bag for the product.  However, the Splashy is absolutely a worthwhile purchase.  There is no other bath seat on the market that can go from ages 1 to 8, which is a huge cost savings for families throughout the years.  It offers so many family participation opportunities from the family backyard wading pool, to sibling fun in the tub, to a day out at the water park, and you can travel anywhere with it easily.  It's not just a bath seat that is confined to your family's bath tub.
It's sturdy, lightweight, fun and easy to clean.  It allows for more options for bath tub play and allowing children to work on occupational therapy goals and tasks in the water because of the 26 different recline options, which gives both the child and parent the flexibility to be at various positions depending upon need and activity during bathing.

It is my shared hope that Firefly will continue to expand it's line to include older children, as I've adored Firefly's products for years and of course worry about what I'll do without them as Noah grows older.  Their products have made his life so much easier and full of joy and I want to be able to carry those same beautiful opportunities into his early teen years.  For now, I remain so grateful that Noah is smaller in size and continue to benefit from the Firefly line for a few more years to come.
I would hands down recommend this bath seat to any parent who had a child with special needs.  It's universal design makes this a viable option for almost all children with special needs.  It's price point is extremely reasonable, and the potential uses make it a versatile product.

If you haven't purchased your Splashy yet, here's the link to head over and check it out!

Happy Splashes!


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

Friday, February 17, 2017

When the Fight Song Comes To An End

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If you've been reading about Noah for years you'll likely know that I've fought some really hard battles over the years for Noah.  Some that would leave any other person incapable of standing and moving forward.  I kid you not.  My resilience for the struggles, hardships and injustices are something even I am in awe that I've been capable of getting through - and even with the perseverance and spirit in which I do it. 

But there comes a time, I think when you have to really reflect on the success of the fight, and even more so what the fight has cost you.  I suppose I thought at some point I could turn pain into purpose.  That was always my goal.  I didn't want others to suffer in the ways that I have had to, navigate the hardships in which I've had to - to heal and fix a broken system that leaves children with disabilities lacking in all the things they need to better their quality of life - all of it.  I had this illusion in a way that I could be everyone's hero - including Noah's.   I'd be able to reach my hands in and help - make a positive difference and inspire change.  

The reality just isn't like that. 

Let's back up a little bit and I'll tell you how I've come to my new epiphany.

The beginning of this year, I've had three appeals stacked up for Medicaid and Medicaid Waiver denials thrown in Noah's direction.  I've fought a long while from start to finish.  From the time of initial funding request to conclusion of events often takes close to a year to obtain final resolution of a matter.   This isn't simple, even for me who has a strong legal background.  It is time consuming, it sucks all the energy out of you, and you know most generally your efforts will be futile anyway but you carry on because your motherly instinct says giving up because your child depends on you - isn't an option.   Trust me three hearings in less than ninety days time is just crazy.

The first appellate hearing centered around a request for technology called VocalID.  It would allow Noah not to have a pre-recorded digital synthesized robotic voice for his AAC device.  All devices like Noah's come with the standard little boy voice "Josh"  and all children using AAC devices that have "Josh" sound the same.  VocalID would have customized his own individual voice using his personal vocalizations combined with his brother's donated voice to give him the voice of what he would sound like if he were a verbally speaking child.  Noah had doctor's recommendations and therapist recommendations for the technology all very strongly written that outlined his safety and need for having this feature on his device.  His Medicaid Waiver approved it, but because Noah has gone over $10,000 funding in a five year period, requests in certain categories (like assistive technology) must be reviewed and escalated to a State level.  As such the State disagreed with the Waiver's approval and a three person panel (made just for Noah's requests) ultimately entered a denial.  The software retails for $1,499.   I battled it out - the State asked for extensions of court hearings, claimed they couldn't get their evidence packet in on time - stretched it out for nearly a year.   I was hopeful an Administrative Law Judge would be able to see through these games that the State keeps playing with me.  Convinced myself I'd prevail because I always do - because there is no other option not to.  I cannot fail my son.

However, the Judge in this case decided that he wasn't going to essentially play "middle man" or second guess if the State department's denial was in error.  The Court's position was that it is the State's power of judgment and discretion whether or not to grant an exception to approving something if a child has exceeded a $10,000 cap during a five year funding period.   "The ALJ concludes that the "shall" language concerning the $10,000 limit is controlling for this review.  Because the Appellant (Noah) has exceeded this limit, the VocaliD is not approved.  Whether the limit "may" be exceeded is an independent decision of the Operating Agency that the ALJ will not second-guess under the circumstances of this case."   The decision to deny the request for the VocaliD is therefore upheld.

So, we now have a Court that says they won't intervene in deciding if a denial was entered in error regardless of meeting the burden of proof to specify otherwise.  If any Judge takes the position that they'll defer to the State's judgment rather than their own - then it makes the process that isn't on a fair playing field for children and families.  The Court is now stating it will stand behind Medicaid's decisions, regardless.

I had another appellate hearing January 30th.  I worked in the legal system for over a decade of my life before Noah's birth.  I'm great at deciphering the tone of hearings, and knowing immediately if there is a favored side or position in a case.  The same was true even with Noah's medical malpractice case.  It was evident that the Judge in that matter favored the Defense, even so much as not finding it a conflict of interest to allow a prospective juror to remain on the jury panel in Noah's case, even though his wife delivered the doctor's baby in which we were suing.   There are lots of reasons that Judges play favoritism, sometimes Judges would even personally discuss that favoritism with me behind closed doors - perhaps they went to law school with someone and maintained a friendship, perhaps their children played together, or sometimes it wasn't really all that subjective like they didn't like what a defendant was wearing or how someone presented themselves. 

The last appellate hearing, the State called in their top expert witness to go against me - the senior director EQ Health - which is a third party agency that Medicaid contracts with to make determinations on eligibility and requests.  She certainly had moments when the Judge should have checked her back in line and he didn't, yet he was quick to correct me on small courtroom formalities. It's also curious that the same Judge has been assigned to the last four of Noah's cases.  Something that usually doesn't happen docket wise unless someone intentionally assigns it that way.  Conspiracy theory?  Maybe - maybe not.  In any case the odds have turned and they are not in my favor, I know it, I recognize it and I feel it.

I don't expect favorable outcomes from the next two hearings either.

Which brings me to reaching the end of my fight song.  I've been a special needs parent advocate for others in the community for years, have pursued legislation, attended board meetings, even gone on local television all in the hopes of shedding light on some very bad things that are happening.  It's come at a great price to Noah.  When you step out of the box there are consequences and these come in the form of retaliation and retribution.  It is real.  I promise you that it is.  I am living proof of it.  The State has labeled me as a "problem parent" and as such has done their best to send me a message.

I was scheduled to offer testimony as to why the Medicaid Waiver rates were unsatisfactory for families March 17th.  I've devoted so much of my precious time and energy into things in which I thought I could change.  But I need you to hear me when I tell you this:  You cannot change it - not by yourself and usually not with the help of others.  It is a powerful system and one that will never care to listen.  Your testimony - your advocacy at these matters aren't to take your words into consideration or your story to heart - it's simply to identify you.  To have you out yourself as a potential "problem parent."  They want to know who to keep an eye on.  And I would strongly encourage you to think twice, three times, four times - one-hundred times before putting yourself out there all for nothing.  Don't be baited.  Don't be like me.  Don't let it make things even harder on you and your child with special needs.

So, I've decided after I see my way clear of the last scheduled appeals hearing March 21st, I will not be filing anymore.  I've also decided that I will simply be using minimal benefits for Noah under his CES Waiver, and will not put in additional requests for medical items and equipment that he needs.  In the end it simply results in a denial and I'm going to save myself the headache.  This means the State will get to chow down on likely close to nearly $20,000 (if not more) of unused funds yearly of Noah's Medicaid Waiver Cap.  Funding they don't even have to legally account for what they do with if it doesn't go to him.   His EPSDT Medicaid a completely different ball-game but yet not exempt from denials either.   The hearing January 30th was an EPSDT Medicaid denial for a Mygo Leckey Tour base, the State thinks I should ask for a hoyer lift instead and because I am Noah's licensed Certified Nursing Assistant that my job is to lift him - even if that means lifting him through Target or the grocery store without a wheelchair - as court testimony provided it's optional if I chose to take Noah out in public all Medicaid cares about is meeting his needs at home.  Not to mention that Noah's DME, NuMotion, did a tremendously dirty deed and corresponded with the State behind my back and provided a copies and pictures of everything they thought they had provided to Noah since birth to demonstrate to the Court that they feel all of Noah's needs are being met and he needs nothing additional at his age (as equipment he had received at age 2 should still fit).  Beginning to realize who's team everyone is on.  Something I only found out about because there was an oops in court exhibits and a personal email was accidentally disclosed to me.

There just comes a point in time you have to realize that you're spinning your wheels and going no where.  I'm not being successful in helping Noah despite my hardest and strongest efforts - the end result is generally the same - whether I win before the ALJ and the State reverses the Judge, or whether the Judge says he's going to defer to the State for their judgment if they felt the denial was appropriate.  Either way I'm losing.  It's just how is that loss defined on paper. 

And it's evident the denials are not going to stop.  I appealed a $100 Wedge Pillow they denied.  A $100 Wedge pillow when Noah is allotted close to $40,000 yearly out of a Medicaid Waiver Cap.  Ironically because they think I should pick out a medical grade one that will cost them close to a $1,000 instead that also does not have the features Noah needs.  I present them with the least costly option and they still snub their noses at me.  I ask them for a product called Carpet Saver to prevent Noah's drool, vomit and incontinent accidents from soaking through to the Carpet and they deny it citing it's carpet - even though it's not carpet.  It's a foam fabric layer you put over any flooring surface to prevent moisture from soaking through - that retails for about $500 for what Noah needs.  Not a break the bank request.

I'm going to find peace with all this, and find more constructive ways to help Noah.  God I don't even know what that is going to look like - but, I know where the help isn't, and barking up that tree is futile.  So, I'm throwing in the towel.  I'm done.  The Fight Song has quit playing.  May the State and Noah's CCB Medicaid Waiver throw a party and celebrate.


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

Friday, February 3, 2017

What Would Maya Do?

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Special needs parent and advocacy is built in many layers over the course of several years.  When Noah was first born I was just clueless.  Utterly clueless on how to navigate anything special needs related.  I was just trying to survive the moment, and perhaps I continued to do just that in Noah's early years. In the beginning you're desperately trying to balance hope, faith and acceptance.  Learning the abbreviations for all the things that will become a daily routine for you is really secondary to what happens to a parent.  Now terms, like CP, OT, PT, SLP, DO, MD, DME, and ATP feel like a familiar language and if you know all of them then you're likely on the same team I am.  But it took me a long while to get my footing, to learn the in's and out's of SSI, Medicaid, Waivers, assistance programs, grants, foundations all of it.  You don't just melt into it. The process is time consuming and overwhelming at times.  Years later it still is, because you are continually learning something new all the time - and the rules will inevitably change on you when you least expect it.

It is always a humbling and honoring experience when another special needs parent looks to me for advice and support and finds importance, value and even comfort in my words with my shared experiences with Noah.  I wished in the beginning that I would have had someone's footsteps to follow in - and I didn't.  Social media was in it's early stages of existence, and bloggers like me were once upon a time rare.  I've never had someone to really turn to on this journey to say gosh what the hell would you do if you were in my shoes because I'm just at my wits end with what to do.   It's a bit like walking in the dark all by myself and then telling others guess what?  I found a way out.

I don't always have all the answers, I wish I did.  I can be walking in the dark a long time before I find my way. And lately it feels like I've been in the dark a lot.  And I have a lot of lose-end fires that seem to be burning for Noah.

I'm stressed, overwhelmed, tired, a tad directionless with what to do next, I'm disappointed in others, I know I'm alone and I'm saddened, and yet I remain hopeful and full of faith that the doors I need to open - hope that the doors of help aren't padlocked with no key.

And then I sat here thinking with all that I'm currently facing in order to help Noah, and that I'm dealing with to give him the best qualify of life I can, the challenges that come along with that - and the circumstances beyond my control that go along with special needs parenting and the continual road blocks I'm up against - what would Maya from Speechless do? 

Although Maya is a simply a sitcom character - the story line is centered around the creator Scott Silveri's life growing up with a brother who had special needs.  It's quite evident that the story line is real.  I feel it weekly almost as if our lives are being shadowed or copied.  Or marriage dynamic, our sibling dynamic, the struggles - our humor to lighten up all the hard parts, and yet our seriousness about the situation still shines through.  To outsiders it's just a one-half hour comedy - for those living with a family dynamic centered around a child with special needs - it's so much more.
It's a validation on screen that we're not crazy.  That the system hasn't driven us mad while we're trying desperately to get approvals for wheelchairs and adaptive equipment, that the struggle is real with quirky and crazy therapists, that everyday hold a new challenge for us - and they certainly won't run out of material any time soon - Speechless will have a multitude of story lines to touch upon with the journey we have with our children.  It gives us a sense of relief because we can say yes, without a doubt Speechless continues to hit it out of the ball park every week.  Even re-runs are extra special because they serve as reminders that yep you're having one of these days again - but some our days and challenges repeat themselves no matter how much they wish they didn't.

I'm not even going to try to glam it up - the reality of the last month has really knocked me to the ground.  It really would the strongest of any special needs parent.  The habitual fight to help your child, the appeals hearings, the therapists who just don't get it, the realization of those who you thought perhaps cared about your child more than they did show true colors, the constant begging - and do mean I have begged for help from others to do their jobs and help me meet Noah's needs, the endless research for avenues to pursue for help, foundations, what to do if I can't get approvals for things Noah needs.  The whole leaving no stone unturned idea is exhausting.  And yet I look at him so precious, so perfectly precious and know that I cannot quit.  Even though my soul is so tired, even though I am fighting with all that I have -

So what would Maya do?  Would she curl up in a little ball and admit defeat?  Nope.
Would she pretend that no one failed her child and turn the other cheek?  Nope.

Maya would get up, she'd brush her teeth in a bathroom with no door because when you have a child with special needs you can't fix anything when you house is falling apart.  She'd take care of everyone else before herself, and then she'd kick butt the entire day and take names.  Settling is not on the table.  Raising the white flag - not an option.  Finding and demanding better because she knows her child is worth it and so do I - absolutely.

Noah is worthy.  He's so worthy of and deserving of an amazing professional team.  And if people can't deliver that then they don't deserve me to grieve their absence in his life.  He's worthy of Medicaid recognizing he is deserving to have his basic needs met both in and out of the home.  He is deserving of sensitive, understanding and competent caseworkers that understand the drive and need behind his requests.  He is an incredible little boy.  He really is.  And I'm not just saying that because he's mine.  To know him is to experience the purest love imaginable.

So in true Maya style, she'd say oh bloody hell with all of it.  And keep moving forward.  I will too.


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

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.