Archive for October 2023

Katie Beckett TN to the Rescue!

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When ME finally qualified for services, we were relieved. 

Maybe now she would get the care she so desperately needed. 

I contacted all of her doctors to share the good news! 

It was almost as if I said nothing at all. Once determined doctors, now looked at me as if they felt pity on me. I could not wrap my brain around this. Our primary insurance had been denying the care they were ordering, for years. Why now, would they not be excited we finally qualified for services. 

Help was on the way! Right? 

The first 6 months of Katie Beckett were incredibly disheartening. ME’s nurse caseworker had limited understanding of what ME needed, or simply didn’t understand the Katie Beckett program. 

I cried buckets of tears when she signed on to our case. I felt as if I was reliving the “caseworker guidance” from “Cigna” (AKA what I came to realize was not Cigna, but instead our self funded benefit plan) . I had never been able to get ME anything that doctors in Boston were recommending to other patients, with ME’s diagnosis, and with the new Katie Beckett caseworker, nothing had changed. It was as if ME and I were falling off a cliff, and both caseworkers were there just to say how sorry they were. No rope. No help. No hope. 

I reached out to individuals with the State of TN. Begged them to look into this. Shared my complete mistrust in any part of TN medical health care. 

I was defeated. 

The system had won. 

ME was on high dose pain meds at this time. So externally she looked to be improving. 

I thought oh my gosh, imagine if we can show Boston her improvement. 

Internally I knew otherwise. 

For years, I used a hand held pulse ox to take ME’s vitals of heart rate and oxygen. This was required of me by her psychiatrist. If her heart rate was too low, he did not want her to get her meds that were holding off the severe Catatonia. So daily, 3 times a day, I placed the pulse ox monitor on her finger. Many times she was too Brady to give the meds. I felt very confused as to why they were not approving the IVIG. But I continued to follow doctors orders to a T. 

After reporting to the Katie Beckett program our complete lack of care, they assigned a new caseworker to our case. 

At this time, I was paying someone to come to our house for 3 hours a day, twice a week. Our services for home health were disrupted this whole 6 months, (which I later learned should never had happened) and our sweet Nicole agreed to let me pay her out of pocket. 

One particular day with Nicole there, I needed to just step away from the care. So I got in my car, and drove aimlessly. Not really knowing where to go. I ended up in a parking lot in a shopping center. I don’t even believe I had time to shop. 

While in the parking lot, my phone rang. 

It was our new Katie Beckett case worker. 

I answered the phone, and simply said hello. 

This kind soul on the other end introduced herself. Told me she was ME’s new caseworker for Katie Beckett. 

I listened. Didn’t say a word. 

I remember her asking if I was still on the phone. 

I replied, “Yes, I’m still here.” 

She said more, but I can’t recall a word. 

I just replied, “I can’t believe these lies anymore. I cannot listen to people who are just going to keep doing what our primary insurance did with their caseworkers. I don’t want this anymore. It took me months and months to get these services. And you’re just going to do what everyone has already done. Nothing.”

I began to sob. I could no longer talk. 

Sarah said, “So do you want her services cancelled.” 

The word barely got out of my mouth, “Yes.” 

I had no strength left to fight for my daughter’s life. I was up 24/7 for days in a row, and it was clear that her care had been neglected by many. 

Sarah then said, “Ok. I will let them know. Would it be ok if I come by and meet her? Maybe Tuesday?” 

Again, I could barely reply, “You can if you want. But I can’t do this anymore.” 

Many ask why I didn’t go to another state. 

Other states told me they could not take cases from TN due to something our Governor had signed. 

Even Boston said they could only do what they already had in place. 

At the same time, ME’s doctors began to say things counter to the experts in Boston, that they sent us to. 

Our sweet ME was caught in the middle of bureaucratic red tape, and this was becoming more obvious by the day. 

I told our new caseworker that she was welcome to come and meet ME. 

I then said a weary goodbye, hung up the phone, and sat in the parking lot crying. 

When Tuesday came, i quickly learned that I had a true advocate in front of me. 

I cried the entire time she was here. Others came too. And all I could do was simply let them witness it first hand for themselves. 

Catatonia is an ugly beast. 

And unfortunately there were steps the physicians should have taken that they never made us aware of. 

ME’s new team quickly taught me what should have been done. 

And for the first time, in all of ME’a life in TN, I finally had a team teaching me what should have been taught to us concerning her care, and the neglect of care we experienced. 

Respitory therapists, home health care nurse, our new incredible nurse caseworker, all bringing the information and equipment we needed all along! 

First up, 24 hour monitoring of ME’s oxygen and heart rate! 

No more spot checking, as was wrongly advised to us. 

And the push for ME to get oxygen, that should have been prescribed years earlier. 

This incredibly professional team, all women, were literally there for me as I was free falling! 

It would also mark the beginning of my husband increasingly realizing he’d been misled by many. The struggle to piece that together, with this new team sweeping in each time he was misled, to guide him, was painstaking. 

I just kept relying on these incredible women to get us through this. 

And they did! They 100% saved ME’s life, and mine in the process! 

****Next up… The day our neurologist told my son and I that she “did not know how to read a monitor.” 

“Would Your Wife Really Go to the News?”

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Before we finally qualified for services from the state of TN, a “nurse caseworker” from “Cigna” would contact me concerning ME’s care, or lack there of. Often. 

Every time I turned around, our doctors’ orders were being denied by our “insurance company”. 

On one particular call, (that I took out of the house since my husband was on calls, working from home due to Covid), I was so sad. The “nurse caseworker” informed me ME was again denied care. 

I began to cry. I was devastated each time they informed me. 

I begged for help. Begged her to tell me what I could do to get the help. She clearly stated that there was nothing I could do. (Again, not true, she was obligated to tell me the appeal process. Instead she said to me, “I’d save that appeal process for the treatment she needs”  Again, coercing me to give up. Definitely against good faith laws.) 

I started bawling. I said to her through tears, “Please ask someone. Please, I’m begging.” 

I then added, “We don’t qualify for services. My husband’s income is past the threshold. The state of TN does not have Katie Beckett, and our insurance keeps denying her care.” 

I then said, “Oh my God, this is news worthy!” 

She agreed it was heartbreaking, and said she’d do what she could to advocate for us. 

We hung up. 

I waited to go inside until I collected myself, so my husband wouldn’t worry. I wiped my tears, and straightened myself up. It was not more than a few moments. But I knew I needed to take a moment. 

I walked into our house. 

Just as I walked through the door my husband’s work phone rang. 

He had it on speaker, so I remained quiet so as not to be disruptive to his call. I began to walk to another room, when I overheard this… 

“John, this is N*** C***.”

John said, “Hey N***, what’s up?” 

N*** said, “Hey, Cigna just hung up the phone with your wife. They said she said she’d call the news about your daughter’s care. Would your wife really go to the news?”

John looked at me, as if to ask me if this was true. 

I was in complete shock. 

He said, “Don’t worry. I’m sure she won’t.” 

N*** said her thank you. As if to say, we appreciate you for keeping her under control. 

I knew my place. I knew what I was just told to do. 

John hung up the phone. 

That was 2019. It was right after we nearly lost ME in November of 2019, and her recovery was going to take up to a year. Recovery that I would have to do nearly all alone, due to denial of care.  (Our “insurance” approved I believe it was 20 minutes of OT, once a week.) For a child recovering from near death, with a disorder that was not addressed fully, this was horrific. 

That was the first day of the end of our marriage… 

That was the first day that systemic denials nearly destroyed our family. 

And absolutely caused ME pain and suffering. 

Along with pain and suffering on me. 

Little did I know what was to come. 

This would be our smallest battle. 

We were just too naive to know it. 

Grover, today I celebrate you!!!!!! 

We made it baby! 

34 years and going strong! 

Happy anniversary to my forever boyfriend! 

Love won! 

Who Is Ultimately Responsible?

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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! 

The Lessons We Learned While Saving Our Daughter’s Life

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The journey that unfolded as we fought to save ME’s life was one we never expected. We were just your average family, raising kids, working hard, and trying to bring good to the world where we could. Nothing out of the ordinary. 

Nothing out of the ordinary until, we were caught in the middle of bureaucratic red tape trying to get ME much needed care to save her life. What we witnessed during this process was horrifying and traumatic. 

Thankfully, we had people guiding us.  They helped us understand what we needed to do to cut through this bureaucratic red tape, that society had placed ME squarely in the middle of. 

As we approach the healing part of this journey, we want to help others going through what we experienced. Our hope is to educate while we tell our story. 

Follow along here as we teach, guide, and one day soon announce our book we are writing. We hope these efforts will help in our continued healing, while we help others.