Nursing Care Update Tonight. Less Heavy Tomorrow.

If you’ve never read the New Jersey Administrative Code, I don’t suggest you start now. Let’s just say it’s not light reading that will leave you with a warm fuzzy feeling after a few hours snuggled up close together. In my search for answers about nursing coverage, it was help in a dry, headache inducing kind of way.

I won’t bore you with a lengthy discourse about insurance companies, our state’s Division of Medical Assistance or OBAMACARE!! (cause if something bad is happening to anyone regarding healthcare it’s got to be related right??? ) No, here in plain English is a summary of why my son doesn’t have nursing care.

Fulton is covered under NJ Family Care. My husband gets insurance through work, however his income was low enough that all our children qualified for free insurance under NJFC. The savings in copays alone have been huge for us. However, because the state is footing the bill, it can set parameters for services provided by the insurance companies that administer NJFC. Private duty nursing is such a service.

Back in February, we submitted all our paperwork to Fulton’s insurance provider (who participates in NJFC) requesting private duty nursing. What I’ve learned is that they reviewed our paperwork (including letters of medical necessity from Fulton’s primary doctor) and determined, based on the state’s criteria, that they would approve seven hours of overnight nursing. They sent that authorization to the nursing agency who, for eight months, took that to mean Fulton could get seven hours of nursing care whenever I wanted it, which was not the case.

When the error was discovered, we were still offered our original seven overnight hours but nothing else in the home. (They will pay for him to go to medical day care.) Fulton does not meet the criteria set by the state to obtain private duty nursing during the day. (Overnight he receives continuous feeds via his g-tube and thus qualifies under the criteria as an aspiration risk.)The NJ Administrative Code does say “but may not be limited to’ next to the medically necessary criteria, but getting care for a child that lies outside those parameters might be too much of a fight for me.

We are requesting the private duty nursing criteria from Tony’s insurance, which he and I are covered by, to see if Fulton would qualify for private duty nursing, no questions asked. If so, we’ll enroll him and start the process anew at the beginning of the new year when coverage takes effect. Until I read our company’s policy over, I cannot say what our next step will be.

Many friends are suggesting a fight, and in principle I agree with you all. I would love to go all Conan and fight until my son gets the services everyone knows he needs right now! However, my house is already a mess, Tony’s lunch breaks are spent on the phone, my carefully planned curriculum is thrown out the window and my time filled with Fulton’s care. What else would have to be sacrificed to make time for a fight? Eating? Showering? I’m doing very little of those as it is.

Which is why I can’t think beyond now; because a future without an easy solution is a knot in my stomach and a lump in my throat. This is not the worst situation we’ve faced, thank heavens we’ve got perspective, but the struggle never feels any easier once you’re in the trenches.

It was a heavy day and I apologize for dumping it all out here, but I know many of you have been wondering and praying so I wanted to post an update. Joyful moments have not gone completely unnoticed around here, and I hope to write about them later. Thank you everyone for your support and prayers! I tried to sum it up without confusing anyone or missing any key points, but please feel free to leave me any questions in a comment or private email.

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  1. I think I’ve told you about the bumper sticker that states: “We already have death panels — they’re called insurance companies.” Medicaid qualifies. Obamacare has helped us in that Daniel can never be denied insurance for pre-existing conditions and they took away lifetime limits. It’s still a lot of fighting for us though and Daniel doesn’t have half of the issues that Fulton has.

    *hugs* Hang in there, Momma.

  2. None of us mind you sharing your sorrows with us. If this means that your load is even a little lighter, then that’s a blessing to us to help you.

  3. I love your blog! Many praises to your humor, honesty and great writing. If you were my friend I would ask: why don’t you send your kids to school so you could take care of Fulton? It would still be challenging but perhaps a little easier on you???

    1. I’m sure many of my family members and non-homeschooling friends would like to know the answer to this as well. Thank you for asking what everyone is thinking. 🙂
      My husband and I both believe very strongly in the benefits of homeschooling. At this point, we are not willing to compromise our older children’s educations by placing them in school. That being said, Fulton’s care cannot be compromised either and we have talked of placing the children in school if the situation demands it. But, for right now, the kids are doing well with online classes and that gives me the time I need to focus on Fulton’s needs during the day. I’d add that I think Fulton benefits greatly from having his siblings around during the day. We’ve always taken a year by year approach to homeschooling, so as Fulton’s (and Teddy’s) needs change we will continue to reevaluate.

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