Tag Archives: National Seating & Mobility

“Strength does not come from physical capacity. It comes from an indomitable will.” ~Gandhi

National Seating & Mobility LetterA little over a month ago, I wrote about the nightmare process of trying to get the correct headrest for my little boy’s wheelchair.   What should have taken six to eight weeks has taken almost a year.  After numerous phone calls and e-mails to the local offices of National Seating & Mobility, I went national.  I wrote letters to their corporate offices explaining in explicit detail the run around I had been given for the past ten months and that this kind of service was intolerable.  I gave them twenty-four hours to respond.  I sent the letters via fax and via certified postal mail so there would be no question as to whether or not the letters were ever received.  My phone rang the very next morning.

The voice on the other end of the phone was calm, but not condescending calm.  She seemed genuinely concerned about my situation and after listening to my fifteen minute rant which basically repeated what I said in the letter, but with tears, she promised that she would see why Joey did not have a headrest.  And then she said the words that I wanted to hear, “Joey will have a headrest, please do not worry about that anymore.”  Now, a small part of me, the jaded, cynical part, didn’t believe her.  As a mother of a disabled child,  I’ve dealt with countless issues during the past eight years regarding Joey’s care. There are the interrogations from insurance companies questioning why my son needs diapers (I had to ‘prove’ he couldn’t walk to the restroom – hell, he can’t even sit up or stand), or why it’s medically necessary for my son to be transported to the hospital by ambulance (hmm, you’re right, his lips were blue and his seizures were non-stop, I should have made the forty mile drive myself instead of calling 911).   It’s never easy and it’s almost always a battle.  But there was something about her voice and damn’t I needed to believe that my child was going to finally get his headrest and he would once again be able to ride in his wheelchair.   I’m trying to adopt a new mantra, I want to be able to have faith and believe in everything until it’s disproved.  I want to believe that people are really concerned and do care.  So the decision was made to believe in her and have faith that very soon Joey would have his headrest.

That phone call took place on a Thursday morning.  I anxiously awaited a phone call from her on Friday, but her call never came.  I reminded myself that she was probably researching how in the hell a request for a headrest ten months ago had now escalated to her receiving a letter from an irate,Sophia Loren Waiting emotional and outspoken Sicilian who could make Tony Soprano cry.  So I cut her a little slack and decided to give her until 10:00 a.m. on Monday to call, but not one minute past.  Monday morning arrived and at 9:55 the phone rang.  It was the call I had been waiting for.  She began the conversation apologizing for all of this mess.  She went on to say that she could see from phone and e-mail records where my calls and e-mails went unanswered and the few times they did reply, it was less than informative.  She went on to tell me that the breakdown of communication happened at Joey’s school.  Joey’s physical therapist made the initial request for the headrest and ordered the wrong one.  This somewhat surprised me as she knew better than most how much Joey needed the headrest that is shaped like a horseshoe.  The intense cover-up that took place once the wrong head rest arrived last April leads me to believe that someone knew they screwed up.  Joey’s therapist tried her best to convince me that he would benefit from a neck brace that would help him hold his head up while he was in his wheelchair.  At no expense to me, she even ordered it and put it on Joey.  Nice try – what Joey would benefit from is people listening to the parents, doing their damn job correct the first time and when that doesn’t happen, own up to the mistake and fix it!  With the correct headrest, there would be no need for a neck brace.  A neck brace that severely limited Joey in moving his head and gave him little range of motion.  My Joey can’t speak, but it was very clear how much he hated that brace – he pouted and grunted when it was put on him.  Since he is unable to swallow, he drools quite a bit. That drool would just sit on the neck brace and it gave Joey a lovely rash on his face.  Yes, this was all benefiting Joey quite well.   You know, I’m a pretty classy mom.  But mess with my children, and I will turn into an ass-kicking mama of a nightmare unlike any you could ever imagine.  So that’s what I did.

Apparently, the powers that be at National Seating & Mobility agreed with me.  Joey now has the headrest I originally requested a year ago.  It was recently installed and the biggest smile appeared on Joey’s face when I sat him in his wheelchair for the first time since last August.  His head no longer falls to the side and he has no need for that ridiculous neck brace.  This shouldn’t have taken this long , but it did.  It’s sad really – that a parent has to fight this hard for the simplest of things for the disabled child.  For over six months Joey hasn’t been able to sit up unless someone holds him.   His life has been in his bed or the occasional car ride to the doctor. No walks outside, no play dates in the park – nothing. Imagine never being in the sitting position.  Add to that, the reason you cannot sit up is because some arrogant moron either ordered the wrong part or took it upon herself to order what she thought would be best for you.   I think at their core, things are never quite as complicated as they seem.  I believe it’s the Never-Give-uparrogance and ignorance of others that muddles the situation and often makes them search for a complicated answer to what is a rather simple problem.  I thank God for giving me the strength to never see anything as an  impossibility, especially since I have a disabled child.  Don’t get me wrong, it’s not that I inhibit some super power or that I’m extremely courageous.  I’m just very stubborn, a little bull-headed and absolutely relentless when it comes to the needs of the disabled.   We all should be, for so many of them, we are their advocates, their voices.  And I make sure everyone near and far hears mine.


“It is not enough that we do our best; sometimes we must do what is required.”   ~Winston Churchill

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“Above all, be the heroine of your life, not the victim.” ~Nora Ephron

7374813-frustration-just-ahead-green-road-sign-with-dramatic-storm-clouds-and-skySomeone once told me that life is only difficult if you make it that way.  I disagree.   I’m the first to admit that I can sometimes be a hot mess and a touch stubborn, but the events that led up to what happened today could have been avoided if people would just do their jobs – and care.   I should be used to this by now, I’ve been dealing with the health insurance and medical supply companies for almost a decade.  It’s almost always exhausting and frustrating.  Sadly, its continually shocking to me  how insensitive people can be to the needs of the disabled.  And it’s also a little shocking how they  still think they can simply tell me ‘no’ and  that I’ll just go away.

My little Joey was born with a terminal illness, Mitochondrial Encephalomyopathy.   Because of this disease, he is unable to walk, talk, sit, stand or swallow and has frequent seizures and intestines that can barely digest the most basic of formula.   Obviously, there is a great deal involved in his daily care. Obtaining what Joey needs to give him the best quality of life is difficult at best and like nailing Jell-O to a tree at worst.  Today was like nailing Jell-O to a tree….. during a hurricane….. while blindfolded…….with one hand tied behind my back……. while listening to Janis Joplin sing lullabyes.

January of last year, new parts were ordered for Joey’s wheelchair.  Upon approval from the dimwitted senseless idiots at the insurance companies, Joey would soon have a new seat, new foot rests and what we desperately needed, a new head rest.  The head rest was the key item in all this.  My little guy has no muscle tone – at almost nine years old he cannot hold his head up.  I had found the perfect head rest for Joey and couldn’t wait to finally have something that would support his head so it wasn’t constantly falling forward or to the side.  After months of waiting, the parts arrived last spring.  My excitement was short-lived when I saw that the head rest being installed was not at all like the one I had requested.  Let me take a moment and give you a more detailed description of how I felt.  Parents of disabled children mayIMAG5503-1-1 know all too well what I’m about to explain.   Imagine that for months you have planned a wonderful trip to Italy. It is long over due and the anticipation is almost more than you can stand.  Finally, it is time for your trip and after a flight that seemed to take forever, the plane lands and the pilot says, “thank you for flying our ridiculously over-priced airline, we hope you enjoy your stay in Herzegovina.”  I’m not exaggerating, that’s how disappointed I was.  See, children like Joey already miss out on many of the things a typical child is able to experience – things like playing hide and seek, running around during recess, football practice, sleep overs with best friends. So, when one of the few things he really enjoys – sitting in his wheelchair – is taken away from him, that affects me more than I can put into words.   No, that’s a lie,  I can put it into words – it really pisses me off!

This new head rest was smaller than the one I had wanted and it did not provide the total head support Joey needs.  The gentleman installing the headrest said Joey would do fine with it and suggested I order a neck brace to help Joey support his head.  Hmmm, how about you re-order the right head rest instead of trying to cover your mistake with another item we don’t need.   Apparently, that wasn’t an option and let me add, Joey did not ‘do fine with this head rest’.  Over the past ten months, I’ve made numerous calls and requests to National Seating & Mobility to replace Joey’s head rest, but I get the same response each time, “Insurance will not approve a new head rest at this time”.  Finally, last Summer a new head rest was ordered, or so I was told.  Months went by and I never heard from National Seating & Mobility (NSM) so Not ApprovedI called them.  Imagine my shock when I was very casually told, “oh, it hasn’t been approved”.   Really?  And just when were they going to call me and tell me this?  Joey hasn’t been in his wheelchair since August of 2012.  No walks in the park, no trips to the mall to see all the lights and people,  he can’t go outside with me while I garden and I have to carry him if we go anywhere – he is almost nine years old and weighs 45 pounds.  Needless to say, we rarely leave the house.

In December 2012, I again called NSM.   This time I was in tears.  I wanted to know why Joey still didn’t have a headrest.  I was told that the order would be re-submitted and they would call Joey’s doctors to get the necessary letters needed for approval.   On February 25, 2013, I sent an e-mail to NSM asking the status of the headrest – I received no response.  So today, I resent my e-mail – twice.  I finally received a reply.  It was very heartfelt and touching,  it said,

“NOT APPROVED AT THIS TIME”. 

No explanation was given and my follow-up e-mails asking for more details have so far gone unanswered.  I can almost guarantee you that the order was never placed in December.  Yes, I sound bitter and harsh.  Guess what?  I am.  But see, when a claim is denied, a copy is sent to the patient, the patient in this case would be my son.  We haven’t received such a letter and the phone calls I made today to a few of my son’s doctors have revealed that they were never asked to write letters requesting that Joey receive a new head rest.  Let me tell you, hell hath no fury like a mama who has been lied to about something her son desperately needs.

Remember that scene in Terms of Endearment when Aurora has waited patiently for the nurses to give her daughter, Emma,  the pain shot?  She first asks very politely and then proceeds to go a little crazy…. I can relate on so many levels to that type of emotional frustration where my little guy is concerned and I wouldn’t wish it on any mother.  I’ve watched as nurses forgot to give him all of his medications and then tried to tell me that I was wrong.  I’ve stood by his bedside and listened to his nurse call the doctor when his CO2 levels were rising and his respiratory rate was dropping and no one would come look at him.  I’ve been that mom that loses it in the hospital hallway because no one will do what they are supposed to do.  So you have to understand that my level of frustration over this headrest carries with it my having to deal with incompetent people on a regular basis.  Parents of children like Joey are already exhausted, we shouldn’t have to beg and plead for the most basic of things are kids need.

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I have learned through trial and error that when writing a letter that is fueled by emotion, it is best to wait twenty-four hours before sending it.  Yeah, well, that didn’t happen today.  With tears streaming down my face, I began writing and faxing letters to NSM’s corporate offices today.

IMAG1832-1  Since I couldn’t find the name of who my letters should be addressed to, I simply put it to the attention of “Someone Who Cares”. They have until tomorrow to respond.  Then I start making phone calls.  If those aren’t successful, I’ll make the four-hour drive to their offices to get my point across.  Honestly, a part of me hopes it comes to that.  I’ve done it before when Blue Cross wouldn’t cover Joey’s wheelchair.  Right or wrong, walking into a room wearing all black,  stilettos and my Sicilian attitude, seems to get the job done.  They really have no idea who they are dealing with.  I gave birth to both my children without drugs, made a hospital administrator cry when questioned about the below standard care my son once received and I deal with more bodily fluids on a daily basis than some nurses.  I don’t scare – at all.

My little guy probably doesn’t have too much time left, of course, I hope I’m wrong on that assumption.  Joey’s illness is progressive and there have been signs of its progression since October of last year.  So you see, I’ll be damned if Joey is going to miss out on seeing the world from a sitting position because someone didn’t order the right part.   Joey is going to get his head rest – and may God have mercy on anyone who stands in my way of making that happen.

That today has almost ended without me kicking or bitch slapping someone into next week  is a little surprising.  I guess there are days where you just have to embrace your little victories and start again tomorrow.

….I wonder which pair of stilettos I’ll wear?

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