Primarily Custodial.

Taking care of a child with complex medical needs is the hardest thing I've ever done. By hard, I don't mean impossible or miserable just hard. Our son Case is seven years old and has a list of medical needs longer than my arm and it would take an entire blog to list them all but lately, his biggest battle is a severe intestinal disorder. He is feeding tube and IV nutrition dependent. As parents, Dan and I don't just care for him medically, we order meds, make sure supplies come on time, go to IEPs and therapies, visit specialist after specialist after specialist. We've watched him endure so many invasive medical procedures my stomach turns when I allow myself to really think about it. That's just the short list of what medical mom's and dad's endure. One of the most frustrating battles we have had to fight is the dreaded insurance battle....
Within the past few months, our son’s primary insurance (the one we pay for, not the one through the state) started. 

I got a call one morning from a young, wide eyed, Special Needs insurance rep concerning coverage of my son’s private duty nursing. The call started like any other, Mr. Insurance Rep: “Hello. This is Mr. Insurance Rep from insurance X calling with some import information. Am I speaking to the parent or guardian of Case McNulty?”

Me: “Hi. Yes, this is his mother”

Mr. Insurance Rep: “Hello Mrs. McNulty, fancy words, etc. etc. We reviewed the request for private duty nursing for Case. The nursing didn’t meet clinical blah, blah, insurance words, etc. So, we sent the request to the Medical Director.....more fancy insurance words.....” and then he said it. The statement of the century. The sentence that was like a hard blow to the gut while somebody ripped the rug out from underneath my feet.”Your son’s private duty nursing is being denied due to the fact that his care is....wait for it....PRIMARILY CUSTODIAL.” He said it. My son doesn’t deserve nursing care or at least they weren’t paying for it because his health care needs are mine and his dad’s job. That’s all those fancy words in Lehman’s terms. I was seriously caught off guard. I’ve heard so many reason’s insurance denied the medicine, nursing care and EVEN inpatient stays (after they happened) that I could recite them in my sleep. Phrases like, "not medically necessary", "does not meet the plan's criteria", and more but "primarily custodial"....that was knew. I knew what he meant but, I wanted him to explain it to me human to human, company to consumer. So, I asked him, “what EXACTLY does ‘primarily custodial’ mean"? He rambled off fancy words in such an eloquent fashion that if I weren’t still laying on the floor with a sore gut and the rug beside me, I may have bought what he was trying to sell me. I'll translate, Dan and I can be taught Case’s gtube, central line, TPN, medicines, injection, etc. and just do it. 24 hours a day, 7 days a week, we can just do it. We don’t need nurses to do what, according to insurance X is our job. “Well”, I replied “You are correct. We CAN care for our son. We know his care and can provide it BUT, what you are really saying is that 24 hours a day, 7 days a week, we are to care for our son. One of us should quit our job, lose out on sleep, not have anytime alone with his siblings, barely pay our bills and solely care for our son.” I didn’t stop there because they obviously did expect us to solely care for Case in all of his medical complexity with zero nursing help. After all, he’s our kid and our responsibility. I agree with the fact that we should know his care and be able to care for all of his needs with out help. We do and we can BUT (and that’s a big but) should we have to? I’m not going to argue politics or get into the details of the mess that is insurance or pick apart our broken health care system because god knows I don’t have endless time and energy to debate those touchy topics. I did however, continue my conversation with Mr. Insurance Rep for just a few minutes longer. I went on to ask him if he truly thought Case’s care, every last ethanol lock to his central line and water flush to his gtube is truly and without a doubt something he (in his heart of hearts, fancy insurance mumble jumble aside) was primarily custodial. He said “no”. He doesn’t believe that we should turn our worlds more upside down than they already are to care for Case with no help and further more, when he clocked out of work that day to go home, have dinner and lay his head down to sleep, I hope Case entered his mind. I hope he remembered me and the flushes, the vomit catching, the central line monitoring and on and on because, well, we can not do this alone. At least not without copious amounts of alcohol and mood stabilizers. We can’t do this without his amazing, dedicated and hard working nurses that stay awake all hours of the night to meet his needs so his dad and I can sleep. Or The dedicated, professional, tireless nurses that care for him while we work and go with him to school so he, just like any other 7 year old boy can experience real life and second grade! We need a village to care for our little boy and home health nurses take up most of that village!

I feel compelled to tell you that I told Mr. Insurance Rep that he was kind and good. I appreciated him truly listening to me and that I don’t think this is his fault. By no means was I trying to kill the messenger nor do I think one phone call one conversation with Mr. Insurance Rep is going to change the world. However, I think it’s vitally important that awareness be raised and home nurses get appropriate wages. It's important to lobby in Harrisburg, talk to your State Representatives, be aware of the broken system and the fact that even though Medicaid in our state usually pays for in home and at school nursing, it’s not nearly enough money. There is a nursing shortage and many parents do have to quit their jobs and lose sleep so the child gets the care they need. 

Our medically complex children need more that us, they need a village.