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. 

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.