Monday, August 8, 2016

Once Upon a Time

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Once Upon a Time... there existed an incredibly supportive adaptive chair called the Comfee Seat that existed in the USA for sale.  It had a big price tag;  For a size 1, the retail was set at approximately $10,800, size 2 at $11,900 and size 3 at $12,600, with a shipping cost of $650.  A price tag that left Noah's parents super sad because they knew they could never fund it out of pocket.  One amazing and lucky day, Noah and his parents had a chance to see the Comfee Seat in person - and even the factory it was made in.  His parents dreamed of the day that steadfast and caring builders would someday be making Noah his very own Comfee Seat.  However, Noah's parents had only one chance - which was to get his Medicaid insurance to recognize that this chair was a medical necessity for Noah and agree to fund it on his behalf for his daily living needs. 

His parents asked his local durable medical equipment provider, NuMotion, if they would put in a request to Noah's Medicaid for funding for the Comfee Seat but assumed the company had failed to do so.  A while later Noah's personal customer service representative at NuMotion replied that Ottobock, the USA distributor for the Comfee Seat, was no longer distributing that piece of equipment for Leckey.  Noah's parent's were extremely disappointed and sad as they could not find a comparable product.   Noah's parents were led to believe that since the chair was no longer being distributed for sale in the USA, that NuMotion never had pursued the insurance request as they were asked. But little did they know...

Eighteen months later, Noah's parents needed to ask Medicaid for a whole bunch of equipment to replace the equipment he had outgrown in his toddler years.  One of those pieces of equipment was a special tomato floor sitter with rolling base and table.  Something that years ago his parents were forced to pay out of pocket for because at that time there was not an insurance code for the special tomato products.  Medicaid raised a red flag with several pending requests and kicked-back the orders before them demanding additional information as to why the adaptive equipment before them was being requested. 

During that time, Noah's customer service representative with NuMotion informed his parents that there was an approval for the Comfee Seat (or what is referred to as a PAR) in the Medicaid system just "sitting there" unfulfilled.  All this time that his insurance had approved funding for the Comfee seat worth thousands of dollars.  A seat that would have been a dream come true for Noah.  Something that would allow him to participate in family life, something that he could use for homeschooling, something he could recline in when he was sick and needed to be upright, something he could eat in, have access to his AAC device in and most importantly that would offer him the postural support that he needs due to his unpredictable tone and lack of trunk and head support, while protecting his hips from further dislocation and above all else making him comfortable. 

NuMotion proposed using the Comfee Seat PAR that his family never knew had been approved all this time, for a Special Tomato floor sitter with rolling base and table worth approximately $1,500 as it shares the same category of insurance funding and coding.  Nearly a $10,000 difference from what was approved.  Noah's family has been sick to their stomach since learning this news.  They know if they consent to allowing the Special Tomato floor sitter to be ordered under the current approved PAR for the Comfee Seat that it blocks Noah from another adapted seating device for about 3-5 years.  And the Special Tomato floor sitter pales in comparison to the level of postural support and comfort that the Comfee Seat would have provided Noah.

Noah's family still saddened and heavy, reached out to Leckey, the manufacturer of the Comfee Seat, with the hopes that perhaps they had changed their minds and would redistribute the Comfee Seat in the USA for purchase.  But the reply came back with the news that they had no plans of ever doing so.

Now Noah's parents are faced with a really difficult decision.  They wonder if they should try to fundraise for the special tomato floor sitter and table so that it doesn't block them from a more supportive adapted seating down the line that Noah really needs way more than the special tomato seat long-term.  Or if they should say yes use that PAR, and then know that if the Comfee Seat or another comparable seating device is found he won't be entitled to an approval for many more years down the line.

It's unfair that Noah's parents were never told they had an approval for the Comfee Seat when it was still being distributed by the manufacturer for USA sale. If only they had known, all this time Noah wouldn't have had to lay on the floor for additional hours because he doesn't have the seating he needs, deserves, and that offers him the postural support he needs, even more unfair that they feel their only option because of financial circumstances it to consent to the Special Tomato in lieu of of the Comfee Seat.

His mom is really heartbroken and it hasn't left her mind for five days since she learned of this news.  She keeps trying to decide on what to do.  She feels boxed in by a system designed for failure, for support that isn't there, endless poor customer service,  and products she needs for her son but can't get, and when she gets close, the rug is always yanked out from under her.  She has less than twenty-four hours to make a decision before Medicaid reconsiders the PAR trade and Noah's customer service representative gets back from vacation and requests a decision.

This won't be the happily ever after ending Noah's family wished for.


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