It's a Matter of Principle

Every so often on this journey as the parent of a child with too many other people involved in his (and our) life, I reach my breaking point with all of it and I say .... enough.  If you recall, a couple years ago I'd reached my "enough" point with the school district, the nursing agency and the our DME company.  Today it was the nursing agency and Jack's speech therapy company.  (This is partly a repeat for those of you who read the Tracheostomy.com message board).

Nursing Agency

Every month a Plan of Treatment gets sent to me from Jack's nursing agency. I typically just stick the paper in his chart without looking at it. However, this weekend I took the time to read through it. In addition to finding a bunch of inaccuracies (including Jack's age), I read that the agency designated Jack's "Disaster Classification" as a "2" which means: "patients requiring moderate level of skilled care that should be provided the day scheduled if possible, but the patient would not be at risk or be in discomfort."

Since when does a child on life support with an artificial airway require a "moderate level of skilled care"?  (whatever that is).  Apparently, if a disaster strikes our area, Jack will be fine for a day or two without having his vent on or his airway suctioned - without risk or discomfort.

Today I called the nursing agency for an explanation.  The explanation I got from the nurse manager was that "no pediatric patients are Level 1 because they have a responsible person who can care for them". I wasn't buying it. She put me through to someone higher up on the food chain and I pretty much got the same explanation. I told her I still have two problems with this: (1) the wording of Disaster Classification 2 does not state that - it states that my child only requires a moderate level of care and would not be at risk or discomfort - which is completely incorrect; and (2) what if I die in this disaster? I'm not there to provide the care - then what?

I was told that the classification was for internal purposes only and that they know that my child is on a vent and that, in a disaster situation, they would immediately make contact with us and make sure we are available to care for Jack - if not, they would send out a nurse.

Fine.

Except for the part that states my child requires a moderate level of skilled care and would not be at risk or be in discomfort. I asked her to remove the language from his Plan of Treatment.  At the end of the day, it's not that important if it's for internal purposes only, but it still bothers me because, as written, the classification is wrong as it pertains to Jack.  I want it out as a matter principle.

Speech Therapist

The only therapy Jack has been receiving for the last few years is speech therapy through our Department of Developmental Disabilities.  Once Jack got his eye-gaze system, we needed - and found - someone who could work with him on it.  We've had this person for the last year and a half. I get so many EOBs every month and after all these years, I usually just throw them in a pile and eventually read through them ... or not.  Usually in the beginning of the year, I do read them to make sure the deductibles are correctly applied  A couple of the EOBs were from the agency that provides Jack's speech therapy.  I guess I never paid attention in the past, because I was shocked to see that they are billing insurance $400 per hour. Unbelievable.  I called their office and asked their billing person why they think they are entitled to bill $400 per hour for speech therapy services.  Rather than answer my question, the woman tells me "we never get paid that much anyway".  Oh, so that makes it okay to bill an unconscionable amount of money?  

I also noticed that they billed for two separate days each week, when they only come once a week. When I asked her about this, she told me that because they come 2 hours a day (which, incidentally, they do not) and they can only bill one hour a day, they just bill the other hour on a separate day ... a day they did not provide services.  What's amazing to me is that the person I spoke with sees no problem with the exorbitant hourly rate or the fraudulent billing practice.  

I'm done with them. I cancelled Jack's speech therapy today. I've always maintained that "righting" the system is not my mission, however, I will not willingly participate in or promote what I believe to be wrong.  It's a matter of principle.

As far as Jack is concerned, his therapist was getting bored with him and his lack of progress and wasn't doing anything of substance when she was with him anyway, so he's not really missing out on any meaningful therapy.

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Thanks for your well wishes for Jack.  We got him started on antibiotics and hopefully once they kick in he can get off the Os and his heart rate will start coming down.  It was a rough week last week because Kristi was out and it's never good for Kristi to be out when Jack is sick because she knows him so well.  

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In case you can't tell, I'm tired and irritated at the world right now. It's time for a vacation.  Mary and I decided not to go to St. Louis during Spring break and instead, we're heading to California for a week of R&R.  It can't come soon enough. 

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In matters of principle, stand like a rock; 

in matters of taste, swim with the current.  

~Thomas Jefferson