Current Nursing: Like I said, after submitting a new request for nursing since we were in the PICU, CareFirst extended the benefit for only 30 days. In the meantime, our primary nurse is not available for the next 2 weeks, and there are no backups. Yay. :/ So, we now we are switching agencies b/c in the last year the current one hasn't staffed one new nurse that has stayed with it. Ahhhh - so we have NO nurses, and will probably have to train new ones while in recovery from the PICU - while maintaining her recovering ourselves around the clock. Tis life. Not sure how that is going to work out.
Nursing Grievance & Appeal: So when all this crap started I submitted a formal "Grievance & Appeal" with the Maryland Insurance Administration (MIA). They gathered information from us, CareFirst, home nursing agency, and our Dr and contracted a third party reviewer, MAXIMUS CHDR. So I was informed that they determined there is "no skilled nursing need" as well - but I wanted written acknowledgment of Emily's needs with an explanation as to why there was no qualifying medical needs. Today I received that letter. I'll summarize a few things here.
The letter provided thorough acknowledgment of Emily's needs as we had presented them. A Pediatric Neurologist was consulted for the review, which I think it unfair b/c SMA families primarily deal with Pulmonologists b/c the complicated care of SMA is mainly Pulmonary as a result of muscle weakness. So, there is no reason for maintaining health, and ultimately life, when you look at SMA purely from a neuromuscular standpoint. There is no therapy that is curative in nature for SMA, so neuromuscularly there is nothing to be done.
The medical evidence has nothing to do with neurology!!
In summary, MAXIMUS determined the following:
... there is no known cure for Spinal Muscular Atrophy (SMA) ... consequently, Emily's care would be considered "custodial in nature and not therapeutic" ... the care is "comfort care and is not curative in nature" ... so, skilled private duty nursing services are not needed and "home health aids would be more appropriate to help manage her care."So, there you have it. Based on some neurologists recommendation, since SMA is not curable, otherwise qualifying needs are determined to only be for "comfort." Translation: Because Emily will eventually die from SMA, CareFirst is not responsible for providing life sustaining support b/c it is not "therapeutic" or "curative." Is that a loose interpretation? I don't think so. So, MIA has determined there is no medically necessary need for Private Duty Nursing and CareFirst is off the hook.
Special Note: This is how one part of our government system has come to the conclusion that Emily's care is being properly rationed by CareFirst based on their beliefs about her survivability -- in other words, they are determining how we can care for Emily due to her diagnosis - NOT her medical needs. There are other parts to our government system, however, and I plan to become quite familiar with them in very short order. This is not over yet!