Meet ME’s service dog, Paisley Grace. 

She takes her job very seriously, just as her uncle did before her. (We buy from this line of dogs because they are exceptional service dogs.) 

She is pure gold. 

She has weaned ME off of night time meds for night terrors caused by all of the medical trauma she experienced. 

She has guided her through her PTSD for medical appointments, which were brutal for years in her catotonic state. 

She has guided her through her social anxiety following Catatonia. Grocery stores. Restaurants. Simple daily tasks. All are so much more manageable due to the support of Paisley. 

This is not a full list of duties that Paisley does. She does her job well, and takes her job seriously. 

So when a  business asks us what Paisley does, 

we say, “She does everything.” 

Fun fact… there are two questions allowed to be asked of service dogs… 

( 1) Is the service animal required because of a disability? 

The answer is simply yes. 

You are not obligated to share the disability. 

That is covered under HIPPA , the right to privacy and under ADA. 

And the second question they are allowed to ask is… 

What work or task has the dog been trained to perform?

The answer is, “The dog is a service dog and performs duties according to the patient’s  needs.” 

No need to disclose those needs. They are not allowed to ask them under HIPPA and ADA. 

If you are intimidated by a business, they have broken the spirit of the law. Report this. 

Those who abuse the system make it much more difficult for those of us who depend on service dogs for our loved ones. 

Comfort dogs are not service dogs. Though a side benefit is service animals do bring comfort as well. 

Please educate yourself on this issue, so families like ours are not the ones attacked by the system. 

#WaltDisneyWorld

Would  you like me to share our journey last week? 

It was less than magical. 

I look forward to giving my review. 

More painful than any words can express since not one single one of these test results were shared with us, until recently. 

I will share all of what I have found out, and what medical professionals have explained to me, that helped me in our battle for her much needed care, one day soon. 

For now, I’d like it to sink in for my readers, that 10 years ago, in 2013, her medical team had data that was never presented to ME’s parents. 

Data that would have saved ME from the excruciating pain and suffering. Saved her from the battle for her much needed care plan. And saved our entire family from the medical trauma we all endured due to individuals who did not fully share ME’s test results. 

Data that was later supported by more data, 

which was also, never disclosed to us. 

One day, I’ll share those test results. 

But for now, I just simply want people to know the science was there. 

It begs the question… 

who could with-hold this information, 

and, why? 

And…

Although we begged to pay out of pocket, the providers said no every time. (As I’ve shared in previous posts, we’ve been told this is to protect the consumer, and if so, that is a good thing. However, consumer protections need to go further. Which one day I will share our initiatives that we are working on concerning this.) 

In ME’s case, the denial went further than the initial denial of care discussed in this article… 

When our doctor sent in the 120 pages of documentation in the fall of 2022, for the off label process, these documents did not make their way to the specialized pharmacy for the off label process until mid December of 2022. (A Cigna employee and an Accredo employee each gave me their contact information. They said they’d gladly confirm this with anyone who would want to investigate.) 

We truly were stuck in the middle of bureaucracy. 

There was absolutely no doubt that ME was the one paying the price for that bureaucracy. 

Let’s get back to the article… 

What is the take away from this article? 

One of the first lessons I try to teach those who contact me is this…

Once you get that first denial,  begin the appeal process immediately. Do not wait. Do not be intimidated. The article states only 5% of all  claims that go through this algorithm will appeal. 

95% are likely,  much like I was, afraid to appeal. 

Thankfully, Dr. Hoy led that process, because,  as he said to us, he needed to do what was right for his patient. 

This low percentage of appeals is likely due to employees not realizing that they can and should appeal. This, along  with lack of education and  of transparency by benefit plan administrators and HR, and you have a recipe for disaster for many who pay into the health benefit plan. 

Fear of retribution from appealing is definitely a factor  for many as well. 

You get the gist. 

Hopefully this article helps my readers grow in that confidence. 

Make sure your doctor/provider is following through on the appeal process,. 

Many providers don’t want to or do not actually even do an appeal,  because that added layer is so expensive and labor intensive for their practice.  

Which, is incredibly ironic and hypocritical, since corporations are using the algorithm to deny claims due to the fact that a physician actually reviewing it would be too expensive. (File this under “things that make you smack your head”). 

However, they think nothing of the medical provider actually having to pay employees, along with the physician’s time and money spent in the appeal process. Again, as I’ve stated in other posts, this is a system set up to pit a physician against their patient. 

Next, absolutely call the Department of Labor for guidance on your rights within your plan. 

This article is everything that was said to me by a local physician who was trying to help us throughout ME’s denials and care. 

This provider shared with me that these physicians who do these mass denials for Cigna and other companies make $200 or more per denial. 

Read the article I’ve attached here, and then do the math. 

This physician shared this with me about two years ago. I don’t even think I fully understood what he was teaching me until it got to the off label process and the 120 page document was with held. 

I’ve told anyone that will listen about the lesson  this physician imparted on me. Many who believed what he said to me went on to get their much needed care approved after following the steps I learned along the way to desperately seeking care for ME. 

Thankfully, this article gives me hope that now others are speaking out. 

This is long overdue. 

Read this article, and by all means share this post.

Perhaps one day these companies will be held accountable for what so many of us have experienced. 

Our battle for ME’s treatment was grueling, 

painful, 

heartbreaking 

and more. 

Nothing.will.ever.change.that.

I’ve written often about the fear and pure exhaustion it put us through. 

Having said all of that…

There is nothing that feels better 

than teaching employees of other Fortune 500 companies, what I learned from ME’s denial of care. 

This opportunity to help others brings some amount of meaning and value to the pain and suffering that my husband’s Fortune 500 Company put our entire family through. 

One family at a time, we are dismantling systemic abuse of power by Self Funded Benefit Plans offered by Fortune 500 Companies! 

And this does my heart so good! 

If you know someone who is struggling getting care, what ever that denial of care is, please feel free to have them contact me. I will gladly take the time needed to help them teach their company’s HR senior lead team how to execute their plan under good faith. 

I shared in my  last post that I will be introducing to my readers the much unknown facts about the Self Funded Benefit Plans that fall under consortiums, associations, and MEWA’s. 

Again, I will delve in more about what I’ve learned about these entities, but here’s another back story. 

As more and more people at IP find out what has happened to us, they then open up to us. 

When they share their journey, we hear one continuous theme…..

The never ending fight. 

A fight that’s beyond anything I hear in disability circles or any other circles for that matter. 

A fight that Memphis providers have told us often is unique to IP. 

So many employees have come to me to share their story concerning their fight for care. (See Note number 1) 

I’ve listened closely as they've opened their hearts concerning some of their most private journeys. 

I try to help guide them through next steps, whether it be the appeal process, or advising them to not discuss directly with HR or Cigna, but instead to put everything in writing.  Or often times simply showing them a copy of our real plan, not the Cigna “example”, so they can make more informed decisions going forward. 

I’ve been brought to tears so many times listening to what others have endured as they’ve pushed through what it takes to get what they, or a loved one, has needed. Care that is in the plan mind you. This is important as we go forward. 

(If it is not in the plan, that is a whole other battle. One that is completely different than denying care that is in the plan.)

Which makes denials that are in the plan all the more egregious. If it is in the plan, it should be dealt with swiftly, professionally, and in good faith. 

(Yes, ME’s treatment was in the plan.) 

We’ve heard stories of people on life saving drugs who  all of a sudden were informed of a denial of their much needed care. 

We’ve listened to stories of employees who shared they were trying to get information, and they are passed from Acreedo, to Cigna, to Express Scripts, waiting on hold, with no end in site, all of this while many are in a moment of desperation. Our experience as well. 

Employees share they spend an incredible amount of time on health insurance issues. We have found this to be unique to IP. Other employees of other companies report that their plan is followed in good faith, and it’s a smooth and simple process. 

It is not only time consuming to endure this process, but also exhausting, and sadly, during some people’s scariest moments. Being able to trust your health care benefit plan is of utmost importance during these very scary times. 

I understand this well. Each time we nearly lost ME, I was too exhausted to understand the system. Too exhausted to do anything but rely on doctors to tell me what we could or could not do. No part of me knew it wasn’t really the doctors making decisions. I was too exhausted to learn this, and counted on good faith laws to protect us. 

I began to  learn more and more what the providers and doctors were doing behind the scenes to fight for ME’s care. This included multiple calls by the provider, and a staff of employees, to justify treatment that has already been justified.  Phone call after phone call by their staff, hours waiting on a line with no one was answering them… 

In spite of the fact that the off label process had already been submitted. 

The Department of Labor and TennCare employees were teaching me all the way through what IP was doing, and what IP was failing to do, to follow their plan. The plan they created. The plan they are obligated in good faith to follow. 

Not only was this frightening to us, as we watched ME decline again, it was truly a waste of so many good people's time and money. This is an absolute incredible burden on the medical community. Especially in the greater Memphis medical community. 

Providers here have informed us over and over again that they either; would not take a case from IP, or they would share with us the well known facts of what they had persevered through for years with IP's Self Funded "Benefit" Plan. 

You know it is bad when your reputation proceeds you. 

Doctors here are pushing an initiative to improve the pre-authorization process that sucks up resources, time and money by the provider. Many providers opened up to us that IP leads the way for this struggle they go through. 

This is neither neighborly to the Medical Community, nor is it ethical. And it most certainly creates an undo amount of stress on employees, their family members, and providers.  

This recurring theme has been at times overwhelming to listen to. Though each time I am drawn in by the care and the compassion of those who tell me their story. 

I often wonder what the SVP of HR and the VP of Global rewards strategy is? 

Surely it’s not to improve the employee experience for IP employees. 

Is their strategy to make it so painful and difficult to get care that people give up, to lower cost? Please tell me this is not so. (I gave up often for this reason. Care that we so desperately needed.)

Is it due to incompetence? This is the best they can do? They’ve not laid out a plan for smooth best practices? 

Is it possible that such a large consortium of companies have too much power? Do we need to push for legislation for oversight of large consortiums?  Or does that already exist in the books, and it needs to be applied? 

Is it causing ripple effects in the organization that are damaging to the trust of employees? 

From those who share with me, here is my takeaway: 

1. Employees' health, and their family members, under the benefits plan, suffer greatly without timely care. 

Mary Ellen’s pain and suffering is something I can never explain in words. I struggled with this especially because I heard my whole adult life about the IP Way, and I trusted that. 

Does this fit with the words leaders routinely say that employees are our most important asset?

It was incredibly heartbreaking to realize the company that my family and I loved so much had withheld a most needed 120 page document. 

I begged, and begged,  and begged for the document to go through the full review process, that Dr. Hoy (See note number 1) so swiftly put through. While my sweet ME literally became sicker by the day. 

How could this be? By the people I had come to trust as family.

Surely they would follow the off label process and their plan for a sweet little girl who did nothing but be born into this system. Who had already fought to live for so many years. 

Surely they would follow the off label process for anyone. 

Surely they follow their plan to a T. 

Though our experience says otherwise. 

2. Other companies do well with managing their self insurance programs.

I hear it all the time in my disability circles. 

Their company follows the plan and processes that are part of the industry, and their child gets care that is needed, swiftly, and easily. 

When families contacted me during this process,  they were shocked that we were enduring this incredible trauma. Having to choose between the company we loved our whole life, and our daughter’s tragic disorder and care to save her life… is a position no one wants to be put in. 

We ask… what would you do? 

Thankfully, due to our fight… 

She is now thriving, and doing amazingly beautiful! Just like Dr. Hoy was certain she would do! 

As federal and state agents walked me through this process, and guided me as to what to say and to whom, they would also share their shock over what we were going through with John’s company. 

It was as if everyone in the industry knew exactly what was happening. 

The only individuals who did not know that all in the industry were telling us, and knew this,  were the people who were denying ME her much needed care. 

Reminiscent of the childhood classic, The Emporer's New Clothes. (Often referred to as The Emperor Has No Clothes)

They shared with me that companies they deal with are going above and beyond with health care to attract and retain employees in this tight labor market. That when the companies are reminded what they need to do to follow ERISA they adjust quickly to ensure they are in compliance. 

This was not our experience. 

3. Recently, we’ve had some local doctors share that they are not accepting new IP patients because IP is so difficult to deal with. One of own providers didn’t want the case because we were covered by IP. They have the right to refuse based on concern they won’t be paid. This provider said they had a history of fighting for payment from this benefit plan, and they did not have the resources to continue to fight them. 

It’s been reported to me, and continues to be reported to me, (all the way to this past Friday), the hours their employees have to invest in from chasing down the payment . This is incredibly burdensome and costly. And truly not neighborly. 

Is the ripple affect that this is limiting the access to the best providers Memphis has to offer? In our experience, the answer is yes. 

This extensive unnecessary paperwork takes time away from them doing what they went to school to do, which is treat their patients. 

Essentially the SVP of HR's execution of the IP self insurance program is limiting access to great doctors for their employees. Pitting  doctors against their patients, potentially for cost savings incentives. 

4. And this one really hits me…. 

What are they thinking regarding getting the best out of their team? 

Unquestionably, if an employee, or their loved one has an health issue, that will trump any work issue every day. 

You’d think the SVP of HR and VP of Global Rewards would want to make health care easy and keep employees focused on the mission of IP. 

Not to mention, people get extremely emotional and stressed working through these health care issues. 

Could these create more health issues?

They 100% do. 

Our family alone can share what the stress of this battle for ME’s life did to us. 

This whole thing just doesn’t make good business sense to me. Also is this moral and ethical behavior from one of the country’s largest public companies?

I’ve so many questions. 

Which always lead to this one… 

….once again, 

why? 

This next blog post comes up filed under "you really should not have to know this in your whole lifetime, but now you do, so you probably should teach others" category.

Over the next few posts I am going to attempt to teach about consortiums or associations, also known as MEWA's in the self funded benefit plan insurance industry. 

Before I delve into that, I want to flash back to what we now know were some of ME's first symptoms of her autoimmune disorder. Symptoms that would one day be described by doctors  on the 10+++ scale of pain, and would cause pain and suffering for years upon years, while we begged for answers.

In 2013, ME's blood platelets dropped at an alarming rate. 

We woke up in the morning on a Sunday, and John went to get ME ready for church. 

He carried her out to us in a panic. 

She was draped in his arms, with petechia all over her face, hands and body. 

The days leading up to this, we had taken her to the doctor because she was no longer bearing weight on her legs. She was in so much pain throughout all of her joints. 

I kept asking the doctors to please help us. Help us understand why this vibrant little girl can no longer walk or run. 

As John approached us with ME in his arms, I remember running to our phone to call her doctor. 

My mama heart knew this was serious, and that we were face to face with something that I truly never ever wanted to face my whole life. 

I called our pediatrician's office.  His colleague was on call, and said to meet us at the clinic immediately. 

So we did. 

He took one look at her and said, "Get her in your car, and drive her directly to Lebonheur. It will be faster than an ambulance." 

We drove ME directly to Lebonheur. 

A St. Jude physician was brought in due to concerns about leukemia. 

Leukemia was ruled out, but the concern was still very high. 

The next day her platelets began to rise. 

ME's pediatrician said basically not to worry, this was just a fluke. 

A fluke? 

I pressed further. 

Were they sure? How could they be sure? Could he do periodic repeat tests to be sure?

(I later found out this is exactly what should have happened when something like this occurs. Which would have led to them knowing that she needed the treatment she is now getting. Which was absolutely available at that time.) 

Instead, the answer to my questions were a very strong definitive no, this was just a fluke. 

Years later, during our search for answers for ME's heart rate dropping, and her oxygen dropping, a physician at Lebonheur looked back on her records. 

As MaryEllen sat next to me, weak from her system being deprived of oxygen and basically dying a slow painful death, the doctor looked at me matter of factly and said, "Get to Boston, get her on a pain plan. She is at a 10+++ pain scale."

Then she added, "Her blood platelets dropping in 2013 were her first symptom of an autoimmune disorder. She should have been treated then."

My mama heart sunk to my stomach. My gut was right. My mama gut was absolutely right. 

Seven years of living in pain with a disorder that was slowly killing her. I now had a doctor piecing that part of the puzzle together for me, but she also passed us along instead of treating her. 

I walked away from that appointment ready to go to Boston to share with them what that doctor said to us. 

The data backed it up. 

It would be years before anyone would truly explain it to me. 

Having this understanding, now, what was avoided by so many for so long, literally makes my heart hurt. 

I have all of her records printed. The entire story is there. Besides the low platelet count, she had another test that indicated tissue damage. We now know that was her antibodies attacking her brain. Thankfully doctors are now sharing with me so I can understand what exactly happened to our sweet ME. Their information lines up exactly with her health records. 

My sweet ME, lost in bureaucratic red tape. 

To learn later that science already told them this, was incredibly heartbreaking. A word I will use over and over again to describe what no other word can be used to describe this journey. 

The thought of ME living in pain, due to what is now looking like cost savings initiatives is truly the most heart breaking thing I could have ever imagined happening to this sweet, kind, happy little girl. 

And me, a mom, begging for help. 

My words landing every single time into the deep abyss. 

Literally begging doctors to hear me when I would say, "Please help us! Something is wrong."

While they had the data all along. 

Each doctor passing her along, as if she was a hot potato in the game of life. 

Silence. 

The silence was deafening in the Memphis Medical community. 

Who was silencing them? 

People likely ask themselves, "Why does Diane continue to advocate for ME even after ME has finally gotten the care she has needed all these years?" 

"When will she finally just move on, be happy with the outcome, and live for today?"

I think this is a valid question, and I would love to address that here.

It is this simple, 

we have so much work to do to right this wrong. 

So many still do not understand how truly heinous this was. 

So much ignorance is still a part of our Disability Rights History. 

In fact, I actually had one individual say to me, after I shared with her that ME finally qualified for Katie Becket, 

"Will you finally be quiet now?"

Yes, this was said to me, in my kitchen no less, by someone I have known for years. 

Someone who has not walked a day in my shoes.

Someone who is not a mother of a child with disabilities. 

A person who has not experienced what it feels like to be a mother who could not get the care her child so desperately needed in the state of Tennessee. 

In shock, I did not reply, I simply turned away, and left the conversation this individual was having with my husband concerning work issues. 

But I put it away in my heart, and remembered to carefully check my audience I was speaking to going forward.

That individual's one ignorant statement was a reminder to me how far we have to go to teach others. 

That even those in our lives who watch us teach daily, may simply not be an advocate for my child and her rights. 

The same rights this individual currently enjoys without thinking about them.

Should I be silent after we are finally getting what ME finally needs, 16 years almost too late? 

Absolutely not. 

The egregious actions by both the state of TN, by withholding Katie Beckett for almost 40 years after all other of the 50 states passed Katie Beckett in some form or fashion, *

and after MANY years of our primary insurance and the Memphis medical community denying care to ME that was SO very needed, **

warrants me 

to never 

ever 

ever 

"be quiet."

*The state of TN withheld the Katie Beckett program, also known as TEFRA, that has been in existence since 1982. This was not only cruel to many Tennessean families who needed it so desperately all these years, it also opened the gateway to abuse by self funded insurance companies. You see, in many states, the only oversight for Self Funded companies is the accountability to the Katie Beckett, TEFRA, programs. 

**Years and years of advocating for Katie Beckett in TN with anyone that would listen to me, years of being denied much needed care by the medical community and our primary insurance, and a VERY long, exhausting, traumatizing process to finally qualify for Katie Beckett TN. 

Living in fight or flight mode for so long (literally years) had done an absolute number on all of our central nervous systems, and this year has been spent healing all of us who were traumatized. 

This includes every member of our entire family. 

Not one of us escaped the trauma of this horrific event. 

Our therapists and physicians have walked us through our signs and symptoms of PTSD, and how to handle them. 

My therapist has supported my need to write about all we saw and felt. 

My therapists and physicians have supported me in my asking that those who know what they did to our sweet ME, to please hold whoever withheld the care, (including a 120 page document that was the key to that care) accountable. 

Writing helps me share our pain we endured, with them. 

It helps me know that they know what these decisions put our whole family through. 

I’ve attempted to do this with grace and clarity. I want my voice to be a voice of change. While I ask for accountability and an overhaul of a broken system. 

The notes I’ve written to them could on their own make a book. A book that would truly break your heart as you watch me beg for accountability and an apology to my husband.

Those notes were the only way I could communicate with those who hurt us. 

I repeatedly told them there is no amount of money that could give us back the years that were taken from us, the hours I begged for care for sweet ME, and the daily gruel of living with a monitoring system going off as her numbers continued to plummet. Watching her in 10+++ pain scale while access to care was cut off by the system. Crying myself to sleep as I lived in fear that this would continue until her last breath. All hope lost. 

Hope that many doctors were sure would come, if only we could get through this incredibly horrific process of the systemic abuse of denial of care. 

Processing medical trauma, as you watch your child literally come back to life, (just as our amazing Dr. Hoy felt so sure would happen.) is a roller coaster of emotions. 

Seeing my husband be betrayed by individuals he considered family was truly the most heartbreaking thing I have ever witnessed in my 34 year marriage. 

Watching him when he’d arrive home each day, after having to walk through the doors of a building that now represented hurt and fear, was heartbreaking. 

A place where people made decisions that harmed his little girl. 

Harmed his whole family. 

A place where he continued to work hard, hold his head high, and do his best for the company he loves. 

A place where the individuals who were involved waved at him from across the room, smiling as if absolutely nothing had happened, without ever once acknowledging the pain, fear, and suffering they had put him through. Let alone asking how our sweet ME was doing. 

Begging for those who know what they did, to please admit what they knew, was my only way to stand with my husband this year. 

My hope was that my begging, would one day help them see the pain they caused him, and their hearts would be softened enough to apologize to him. 

This act of goodwill would begin his journey to forgive those who hurt him by harming his family.  

I truly believed they would. 

I truly believed in these people I had known my whole adult life. 

I trusted that they had the hearts I remember them having when we were all young adults, coming up together, in a journey that bonded all of our families. 

I believed with all my heart, that accountability and an apology to John would come, if they were made aware of what this denial had caused to ME and our whole family. 

I trusted them. 

That apology never came. 

Even though I begged over and over for the person/persons who withheld the 120 page document to please be honest, take responsibility, and please apologize to my husband. 

Nothing… ever… was said… to offer him healing and the opportunity to heal from this trauma. 

Maybe one day they will. 

But for now, as my therapist has said, with such incredible wisdom, do something today that is self care for you. Get outside  and maybe blog a little were two of many pieces of wisdom she gave to me yesterday. 

I did both. And more. And really focused on her words all day long. 

So here is my blog post today, a day after walking  my husband through his grief of recognizing that people you once admired can indeed hurt you and still never say they are sorry. 

Hurt people, hurt people. 

Which is why we believe therapy is so important. 

I do not believe in hurting those who hurt you. It only hurts you more. Forgiveness heals you. 

We choose to forgive. 

So I will focus on my healing,  on continuing to help other caregivers who are in the battle for their child’s life, while supporting my family through love and the best support I can give them, for their healing. 

All while I forgive those who did this to our sweet ME, (as I process these last many years of watching her suffer), while still asking anyone that will listen, for accountability for their systemic failures that took years of our life, caused an incredible amount of suffering, and quite literally nearly took our sweet ME’s life. 

Forgiving them as I process the pain, while holding them accountable for their actions, and creating change, are not mutually exclusive. All can occur at one time. And should.