A little more insight to help understand

An excellent question was asked in response to our last update by Grandma M. While we included the short answer on his Tag Board, there is a lot that was not articulated very clear. Mainly because it is complex and at the time of the update our thoughts were still a bit unorganized. The following is a partial excerpt of an article we found from The Washington Parent. This portion of the article is an excellent identifier with Elias, almost the exact same scenario. We thought we would share this because our case manager, without knowledge of the article, warned us that getting the home care set up can be a lengthy process and we should be mentally prepared. We hope this sheds some light and clears some of the fog of confusion on what we are about to embark.

Bringing Baby Home

Navigating the System and Finding Support for a Sick Child

by Deborah Dangay

Trying to Bring our Baby Home: Born August 6, 2001

Once Gabrielle had been stabilized and was able to breathe and be fed, albeit with the help of machines, we were ready to start thinking about bringing her home. The big job was to learn to care for her tracheostomy tube, including taking out the existing trach tube and replacing it with a new one once a week. Because she could not breathe on her own even for a few minutes, this had to be done quickly, and because it can be painful, it had to be done gently. The first time, my job was simply to watch while the nurses and respiratory therapists changed the trach. How would I ever learn to do this myself? What if I had to do an emergency change alone at home? Would I be able to save my baby's life? I quickly realized, however, that we had to learn. The alternative was to leave Gabrielle in an institution, probably for years. Unthinkable. So we gritted our teeth and learned how to suction, clean and change her trach.
I thought we were getting close to bringing her home, but I was wrong. Even though she was considered too strong for intensive care at this point, the doctors felt she wasn't quite ready to leave. They wanted her to spend a few weeks at a long-term care facility — an intermediate step while we practiced caring for her and made appropriate insurance arrangements. On November 1, Gabrielle went to the Hospital for Sick Children (HSC) in Washington while we tried to work out the details.

Maryland's Model Waiver Program:

We were eager to have our daughter at home, but Gabrielle's doctors wouldn't release her unless she had home nursing care, meaning a nurse in the house for the night and most of the day. But our insurance company refused to pay for this type of care.
Fortunately, we live in Maryland, which provides excellent support to families of children with disabilities. We were told about Maryland's "Model Waiver" Program, a program designed to ensure that children with serious health problems can be cared for at home. If the child meets this criterion and does not have private insurance willing to cover the cost of home care, the Model Waiver Program can step in. The program provides Medicaid benefits for the child while waiving the normal income limitations for Medicaid eligibility (hence the name).
In our case, this meant that Gabrielle could come home, with the Model Waiver Program paying for home nursing care, medical equipment and supplies not covered by our insurance. Because of the income "waiver," we would not have to liquidate our retirement and college savings or sell our car in order to qualify for benefits. We were struck by the irony that our insurance company was willing to pay for Gabrielle to stay in a hospital, but not for her to come home and be cared for by her family.
Because the Model Waiver Program is a "payer of last resort," Gabrielle could not be enrolled until our insurance company formally stated that it would not cover home nursing care. This denial, coupled with doctors' orders that Gabrielle must have such nursing care to come home, would qualify her for Model Waiver coverage. We thought that completing the paperwork would be fairly straightforward and that she would remain at HSC for no more than a couple of weeks. I thought of how exciting it would be to have her home for Thanksgiving.
Although our insurance company wasn't willing to pay for the nursing care, they were also unwilling to provide a written statement to this effect. Thanksgiving came and went. I spent each day in a frustrating round of phone calls with the state of Maryland, our insurance company and the dedicated social worker at HSC. It got to the point where the insurance problems were actually more stressful for me than Gabrielle's health problems!
As Christmas approached, I felt a sense of desperation. Gabrielle was born in the summer, we had been ready to bring her home since Halloween, a melancholy Thanksgiving passed in the hospital, and now there was snow on the ground and still no firm date to bring my baby home. I finally lost my temper and screamed at the assistant to the insurance company president. The next day, we received a written statement denying home nursing coverage, which paved the way for approval of Gabrielle's Model Waiver application. Gabrielle's long-awaited homecoming finally came on December 20, 2001. She was 4 _ months old. I was excited but also weary from seven weeks of fighting for this day.

This was enlightening and unfortunately a reality that is all too common when dealing with an insurance company. We are already experiencing some of this resistance from ours, stating that a letter is not needed. Our Case Manager is fighting for us right now, but she has already been told this twice. We are also trying a different route, via the policy in written form that physically states "home care is excluded from this policy." Since the insurance plan via Katharine's company switched July 1, we do not yet have a copy of this and are requesting one via HR on Monday.

One final thought on all this. Setting aside the insurance and assistance bureaucracy, it really boils down to one thought. We feel as if we do not have an option or say so here. The doctors in the NICU say he is approaching the point where they can no longer justify the acute care and that is why he must be transferred. It is ultimately up to the insurance company, which will likely deny his request to remain in the NICU. We are going to try anyway, but if it is denied, we feel as though we are being forced into a situation that we are not comfortable with because of the insurance! It is ridiculous and mind boggling that we must endure this level of frustration, especially from something we have absolutely no control.