At Home and More About Skilled Nursing... #SMA

First -- Emily is home. Not even 2 hrs after arriving at home Emily's oxygen saturation started dropping and her heart rate started climbing. Ugh. We thought maybe she caught something while in the PICU and now it decided to show itself to us. We packed everything back up and started arranging something for a very sad almost-8-yr big sister. SUCK! We decided to continue at home and do treatments all night with supplemental O2. That turned out to be a good decision. Maybe Emily was just REALLY tired or something, but we are back off O2 and she has been quite happy today. Her BiPAP settings are still elevated, but that's ok for now.

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!


Steve said…
Wow, just wow. Hard to believe. Good luck in your continued
Unknown said…
Good luck with the insurance company!! I know that it is always a big battle. Have you asked what their policy is for other illnesses that are not curative (i.e. cystic fibrosis, terminal cancers) where nursing care can increase length of life?
Nate said…
@Shannon - unfortunately there is no representative to ask. :/ I have to go through official complaint channels to get ANYTHING heard on this. So, if you follow this logic, MIA says "good riddance" if you have an incurable disease.

Get this - they even recognized that our care of Emily has prolonged her life! And we can easily argue that it has prolonged a "good quality" life! It's easy!
Anonymous said…
that is just simply insane. any meatball-head can see that while yes, emily has sma and yes, there is no cure, she certainly is a lively child with much will to live, and appears to have a wonderful QUALITY of life...and needs more than just "sustainment of life"...

keep fighting the battle! emily sure is fortunate to have such great advocates!

and an additional YEAH for being able to stay out of PICU and manage at home!