Many know that John and I had reached a point in our relationship, due to the stress and battle, where our only choice going forward was to agree to a separation. His belief in the company was overriding his ability to see what was being taught to me by employees of the state of TN, the federal government, and Cigna.
ME needed round the clock care, and now that John and I were separated, I spent a lot of time with ME and her home health team, alone.
During this time, I made the decision to study self funded benefit plans. I needed to understand the system, so I could fight the system fairly.
ME’s medical complex needs dictated my schedule. I could not leave. This was the best use of my time, and was so needed. I was at a disadvantage in advocating for her until I learned all I could learn. This was also while I begged the state for help through their newly funded Katie Becket program, who, actually, became my biggest teachers.
I studied self insurance benefit plans as if it was another major I was taking in college.
I read and asked questions to anyone that would respond.
Cigna employees were a huge help in my learning curve.
I called at night after I’d get ME to sleep. That seemed to be the sweet spot for getting an employee who would help me understand ME’s denial, and how it was handled inappropriately.
Cigna employees would cheer me on, and tell me, “If it was just” their “company, and they weren’t the 3rd party, this would not be happening.”
After years of Cigna “nurse case workers” calling me during the day,
and endless, hopeless conversations,
I finally realized that my calls at night would get me the most information from their employees every time. They would give me the info I needed to understand what was not happening properly. I’d ask them for their name, employee number, and note the date and time.
I repeated these calls often to see if a different employee would tell me something different than the initial employee.
I would then go to our nurse caseworker for Katie Beckett, Sarah F as we affectionately call her, and ask her to explain what they said to me further. This is where the REAL learning happened! Sarah F is/was the hero! Painstakingly walking me through every detail.
The state had approved it immediately, and Sarah F, and later, the pharmacist for the state insurance program, taught me everything I needed to know about the off label process that my doctor had done.
Our entire Katie Beckett team were broken hearted for us.
Each one educating me on ME’s rights, and educating me on the laws and the system.
All teaching me from their perspective what was happening to ME. Respitory therapists on her team calling me almost daily to check on me, as her episodes were increasing every minute. ME was being remotely monitored by the state, 24 hours a day.
We all waited, terrified, and nearly hopelessly for the primary insurance approval to come through.
Without it, we could not get access to care.
We could not pay out of pocket, (read previous post concerning this)
They stayed calm, professional, and caring. Gently asking me if she had her oxygen on. And then always transitioning over to how I was doing. Through tears I would assure them that I was ok. That lie to myself got me through that moment. For that second. But the reality that we were running out of time never left me. I believed with all my heart that my husband’s company would come to their senses, follow the off label process, and apologize for the misunderstanding. That day never came.
I would wake up each morning, after only a hour or two of sleep, (due to her monitor going off all night,) grateful she had made it through another night. At this point I was sleeping in the same room with her, as I had for months. I would reach over and feel her warm hand, grateful what I had been taught could happen while she slept, didn’t happen, and we made to another day.
Along with Cigna and Katie Beckett employees teaching me, I was also being instructed by EBSA. The federal employees went so far as to teach me what to say, and who to say it to.
Document, document, document was the running theme by all. I documented as if her life depended on it. And it did.
Frequently, advocates would reach out to me asking how I was doing.
During the time that John and I were separated, I would tell them, “My daughter is dying a death from oxygen deprivation to her brain, my other children are completely traumatized, and my husband and I have been destroyed. All because of systemic denial of care taking a toll on our family.”
They knew this already.
And all they could say is, “I’m so sorry Diane.”
I would then say, “I’m ok, I promise. We will be fine one day. I know we will. What ever the outcome. In the meantime, I’m doing the best I can, as I’m losing my family while trying to save my daughter’s life.”
While tears rolled down my cheeks I willed myself to believe the words I just said.
I’d add, almost as if trying to remind myself to keep going, “Calling politicians and learning all that I can about this self insured world, is all I can do right now to not break down and quit.”
Somehow, calling politicians made me feel like I was actually doing something about this horrific situation we were in.
(As I shared in the previous post, it was a politicians’ staff member that, ultimately saved ME’s life. Representative Kevin Vaughan’s office staff got to work immediately, and contacted the TN Justice Center! TNJC are the advocates who got the primary insurance denial overturned by a judge.)
At this same time, John’s job was becoming increasingly busy.
So trying to teach him all that I was learning would be seemingly impossible.
Learning everything that state/federal employees, Cigna, disability advocates, and leaders in the TN disabilities community were teaching me became, for him, at times, overwhelming.
And quite honestly it all frightened him.
I would give him small lessons each day from the information that they were teaching me. I kept the lessons as simplified as possible. And when possible, I asked them all to please explain it all directly to him, in laymen terms, so he can understand, and not be overwhelmed.
Slowly, he was learning from them as well.
This did not relieve our stress, as ME still so desperately needed care. But it did begin to unite us again as a couple.
ME and all of our children needed this.
They needed their parents to be united, whatever the outcome.
The race against the clock, while we tried our best to support our other adult children in their one and beautiful life, became our focus together once again.
The separation remained as we worked to re-establish our trust in each other again.
People would ask me if I was going to date after our divorce was final.
(Yes, that was asked more times than you can imagine.)
My answer was always,
“Yes! I’m going to date John Grover again!
I’m going to win him back one day because he’s the only one I want to date for the rest of my life!
But for now, I need to let him go.
But absolutely, I’m going to date.
I’m going to date him!”
Love won!
We are now united SOLIDLY as a family!
Back to my question in the title, “Who is Ultimately Responsible?”
That is what we are currently studying so we can work with politicians to create legislation that will prevent this from ever happening to another family again.
I’ve been taught very clearly who is responsible by EBSA during the ERISA process.
I knew exactly who was responsible.
One day, maybe others will too.
And we hope to create legislation that holds that person/persons accountable.
Watch here for updates on that effort!
For now, we are enjoying time with our sweet ME, and our family.
Love won!
