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.