Stop scribbling on scrap paper. Here is the exact system I use to hold insurance companies accountable (and keep track of what has been said).
In my last post, I talked about the importance of documenting every single interaction with your insurance company. But let’s be honest: when you are managing a chronic illness, working, or just living life, finding a notebook and a working pen while on hold is just one more hurdle.
My husband and I realized early on that we needed a system that was fast, shared, and impossible to lose.
Our solution? A simple Google Form.
It lives as an icon on our phone home screens. When we get on a call, we tap it, fill in the blanks while we talk, and hit submit. It automatically saves everything into a spreadsheet that we can search later.
Why This Works Better Than a Notebook
It Prompts You: You never forget to ask “Who am I speaking with?” because the form requires you to type it in.
It’s Collaborative: If my husband takes a call, I can see the notes instantly on my computer. No more “Did you call them?” arguments.
It Creates a Timeline: When you need to file a grievance (like I did), you just open the spreadsheet and copy-paste the entire history.
The Fields You Need (Steal My Form)
I created a free Google Form with these specific questions. You can copy this exact structure:
Patient calling about: (Checkbox: … Names of those in the household, etc.)
Date called: (Date picker)
Who contacted? (Checkboxes: Benefits, Care Management, CVS Caremark, HR, etc.)
Method of contact: (Checkboxes: Phone, Email, Secure Message)
Did I record the call? (Yes/No – Check your local lawsas many areas require you to ask permission to record.)
My Script: “I need to record this call so I have a record of what to do next. Do I have your permission to record?” Note. Be sure to note this to any new call participants.
Note: If they say “No,” I immediately ask: “Since you are recording this for quality assurance, can I request a copy of that recording for my records?” (This usually changes the tone of the conversation!)
Name of representative: (Crucial! Always ask for this first)
Reason for call: (e.g., Prior Authorization, Billing Error, Benefits Question)
Summary of call: (What did they say? What did you say?)
How long were you on the call? (This is important evidence for complaints)
Action items: (What did the representative promise to do? What do you need to do?)
Follow-up date: (When should you check back?)
Header for your form.Settings for the form. Some are personal, but this let’s me and Josh know who entered the data.I have the email addresses required by default and the same for questions. (You can set some as not required.)
How to Set It Up
Go to forms.google.com and click “Blank Form.”
Add the questions listed above.
Click “Send,” copy the link, and email it to yourself and your spouse/caregiver.
Pro Tip: Open the link on your phone, tap “Share” (iOS) or the menu dots (Android), and select “Add to Home Screen.” Now it looks and acts just like an app.
The Result
When my pharmacy billing nightmare happened, I didn’t have to rely on my foggy memory. I opened my spreadsheet and saw exactly who disconnected on me on January 29th, and exactly what “Curtis” told me on February 6th.
That data wasn’t just notes; it was evidence. And evidence is the only thing that wins insurance appeals.
Disclaimer: I am a Speech-Language Pathologist and person with chronic illness, not an insurance broker or attorney. This post shares my personal experience and is not intended as legal or financial advice.
A real-life lesson in why you must audit your Explanation of Benefits.
We often assume that when the pharmacist rings up a total, or when a medical bill arrives in the mail, the number is correct. We assume the insurance computer “knows” our plan.
But we also know that the insurance computer (and even the claims processors) have a history of applying the plan incorrectly (or inconsistently).
In January I had accepted that the “computer” knew our new plan for our prescriptions —and it nearly cost my family over $1,300 in a single month.
Image created by Nixon Speech and Language, LLC using Adobe Firefly AI.
From Advocate to Patient
For years, I essentially worked two jobs. By day, I was a Speech-Language Pathologist working full-time. By night, I often spent three hours at a time, multiple nights a week, on the phone with insurance companies fighting for my own coverage. I learned early on that whether you are an educator advocating for a student, provider advocating for a patient, or a patient advocating for yourself, the system will often default to “No” unless you prove otherwise.
Now, living with chronic illness and on long-term disability, I no longer have that kind of energy to spare. My “work” today is largely just managing my own health. So when a computer glitch recently caused our pharmacy bills to skyrocket, it wasn’t just a financial error—it was a drain on the limited energy I have to survive.
I’m sharing this story not just as a professional who knows the paperwork, but as a patient who knows the exhaustion. I want to help you catch these errors quickly so you don’t have to spend your evenings fighting for the coverage you’ve already paid for.
The “Glitch”: When the Math Doesn’t Math
The “Glitch”: When the Math Doesn’t Math The situation started simply enough: My husband went to pick up a routine prescription. Instead of his usual $60 copay, he was charged $807.
The explanation from the pharmacy? “You haven’t met your deductible yet.”
That sounded plausible. It was January, the start of a new plan year. But when I logged into my portal, I saw something even stranger.
I had paid over $1,000 for medications in January, but my “Deductible Met” counter was sitting at $0.
Where did the money go? The system had bypassed the deductible entirely and applied the cash directly to my “Max Out-of-Pocket” limit.
The Error: They were charging me full price (as if I had a deductible), but refusing to credit my deductible bucket.
The Result: I was on track to pay thousands of dollars out-of-pocket without ever technically “meeting” my deductible. It was a phantom charge that left me with the worst of both worlds: high costs and no progress toward my coverage limits.
This is what an error looks like. My plan has a $0 pharmacy deductible, yet the system charged me over $500.
The Domino Effect: Why You Can’t Just “Let It Slide”
You might be tempted to just pay the overcharge to avoid the hassle. I understand that urge completely. But here is the trap: Insurance systems use something called an “accumulator.” It tracks how much you’ve paid toward your deductible.
If you pay a deductible that you don’t actually owe, the system “learns” the wrong information. Later, when you see a doctor or go to the hospital, their claims might get stuck or rejected because the math doesn’t add up. By fixing this one pharmacy error, I wasn’t just saving money on a prescription—I was unblocking thousands of dollars in medical claims that were stalled in the system.
The Hidden Trap: When the pharmacy system sends the wrong data to the medical system, it freezes your processing medical bills.
Red Flags: How to Spot an Error
Unfortunately, we had already paid for the medications. Although the error was corrected in the “Carefirst” and Caremark.com com systems as of February 2, 2026 (excepting my order receipts), we did not receive a refund or even notification that a refund was due.
In fact, after speaking with several representatives this week it seems the “correction” was backdated; however, neither Caremark nor the local pharmacy where we bough a medication were told we were owed refunds. Our local pharmacy credited us the money for their end, now I am trying to get a refund from Caremark.
Here is how to know if you should question a charge:
The “Deductible” Surprise: If you have a PPO or HMO, your prescriptions usually have flat copays (e.g., $15, $30, $60) that apply immediately. If you see the word “Deductible” on a pharmacy receipt, check your plan design.
The “Phantom Payment”: Check your insurance portal after a big purchase. If you paid $500 at the pharmacy, your “Deductible Remaining” should drop by $500. If the money disappears into the ether (or only hits your “Out-of-Pocket Max”), the system is miscoded.
The “Processing” Limbo: If your medical claims (doctor visits) are sitting in “Processing” for weeks, it often means the medical system is waiting for the pharmacy system to send data that—thanks to this glitch—will never arrive.
The plan thought we were in a different plan type offered by my husband’s group, a CDHP plan, but we are in the plan above.
Strategy: Write First, Call Second
The Reality: Phone calls are exhausting. But sometimes, secure messages result in frustrating, boilerplate responses that don’t answer your question. (I received a generic reply about “brand name drugs” that had nothing to do with my actual billing error!)
My advice: Even if you know you’ll have to call, send a Secure Message first.
It creates a legal timestamp. Even if their reply is useless, you have proof that you reported the error on “Date X.” They can no longer say, “We have no record of that issue.”
It forces a written response. When you finally do get a human on the phone, you can cut the small talk: “Please open Case #12345. I have already submitted the details in writing.”
It respects your energy. If you have to file a formal legal grievance later, showing that they ignored your clear written explanation makes your case much stronger.
In my Caremark secure message center. There is also one for your health insurance company.
Pro-Tip: Document Like a Clinician
When you are dealing with brain fog or fatigue, relying on memory is risky. I treat every insurance interaction like a patient case note.
Log Everything: Date, Time, and the Representative’s Name.
Ask for the Reference Number: Every call has a “Case ID.” Ask for it immediately.
The “30-Day” Clock: If they say they will “review it,” mark your calendar for exactly 30 days later. If they haven’t fixed it, they may owe you interest.
See my post on creating a “patient’s log” that may help you track who said/did what (and when)
The Magic Words to Use
If you do have to speak to someone, use these terms to get past the front-line script:
“Plan Design Error”: This tells them the computer is set up wrong for your specific group.
“Adjudication Breakdown”: This asks for the math behind the price (e.g., how much was copay vs. deductible).
“Accumulator Adjustment”: This asks them to fix your deductible history so future claims process correctly.
“Senior team”: If you have already worked with the senior team on your issue, then explain the time it has taken and ask for the appropriate representative
The Takeaway
It took weeks of persistence, but we finally got a break. A representative worked with our local pharmacy on one claim and we were refunded for the discrepancy that was initially erroneously classified “deductible” ($747 of the $807.07 prescription cost). The call was disconnected before he could let me know how he was managing the issue with the Caremark pharmacy payments, but we have the proof we need to win.
I spent years advocating for others. Now, I’m learning that the most important advocacy is often the kind we do for ourselves—quietly, methodically, and with the receipts to prove it.
Disclaimer: I am a Speech-Language Pathologist and educational consultant, not an insurance broker or attorney. This post shares my personal experience and is not intended as legal or financial advice. Always consult your specific plan documents for coverage details.
Stephanie M. Nixon, Ph.D., CCC-SLP January 29, 2025
The power of a name, label, or diagnosis – even the name of a symptom
What’s in a name? A label? A diagnosis? Does knowing a diagnosis grant us power? Does it provide the knowledge we desire when confronting a situation (not just learning disability or health-related)?
When I wrote about this years ago in my undergraduate thesis about Egyptian religion, I noted the similarity between naming gods and goddesses who “controlled” various aspects of life (love, weather, sun, rain, etc.) and naming hurricanes. I know this is over simplified in some ways, but there is a parallel.
“Sometimes naming a thing — giving it a name or discovering its name — helps one begin to understand it. Knowing the name of a thing and knowing what that thing is for gives me even more of a handle on it.” — Octavia E. Butler, Parable of the Sower
Thinking about what Octavia E. Butler said above, it makes sense (at least to me). It helps to just understand sometimes. And other times, it might bring a “fix”. Granted a often there isn’t a “fix” or “cure” for learning disabilities or chronic illnesses or even natural disasters. i.e., It’s not always just here, take this medication for 10 days and you’re all better. (I wish it was that easy…)
For ADHD and autism, there are no cures but there are treatments and there is understanding.
For chronic illnesses like my diagnosis of Hashimoto Thyroiditis, often there is no cure. You might need to take a medication daily depending on your doctor’s advice. Some chronic illnesses are even progressive. Some are merely described via symptoms, but we cannot “cure” it.
For natural disasters, we cannot stop the hurricane from hitting an area, but we can prepare for it. And we can provide disaster relief afterwards to help an area recover
What have I seen, personally and professionally?
As a practitioner, I sometimes patients/caregivers wanted a diagnosis and others wanted the descriptor and support. For adult and pediatric patients, a label can help with insurance coverage. For pediatric patients, a label (i.e., a diagnosis – even working diagnosis, e.g., autism, dyslexia, etc.) can help with access to special education services and accommodations and insurance coverage for services.
As a patient, adding the diagnosis of autism to my long-time diagnosis of ADHD helped me understand those feelings of overwhelm from too much noise, too many “things” coming at me, and much more. Has it “fixed” the situation? No. But it gives me grace in those moments or even afterwards when I can recognize the link to “autism”. (I recognize this won’t apply to everyone. Some people find hearing the actual diagnosis scary.)
What’s in a name?
When it comes to chronic illnesses (even acute), speech and language disorders, learning disabilities, autism, ADHD, and more, we as patients (and even practitioners) often want to know the diagnosis/name. We want to understand what we’re dealing with. But why?
Empowerment, knowing how to prepare, find options, and find ways to cope (social groups, etc.)
Validation, knowing what we feel/see is happening, someone else sees it
Understanding, understanding of ourselves and what we need and for parents of a child, understanding of a child’s needs
Forgiveness of ourselves (our children and loved ones where applicable), knowing a “diagnosis” can help a person recognize how the diagnosis affected a situation and forgive themselves or another for this. (I’m not saying a diagnosis is an excuse! I’m saying, it can give that allowance to make that mistake.)
Access, having a diagnosis or adequate symptom description can give access to accommodations, insurance coverage, and research studies that are otherwise unavailable. (e.g., For pediatric speech-language therapy, many private insurance plans have exclusions saying that services are only covered in cases of accident, injury, stroke, or autism spectrum disorder.)
What do many patients want?
As a patient, I want to be heard. I want to be validated. I am living this life, not the practitioner. I want that practitioner to treat me like I treated my patients, which is to listen, genuinely listen. Don’t discount what I’m telling you because you aren’t seeing it in this moment at this time.
When I saw patients, I tried to remember, treat them like I wanted to be treated. Yes, they may want the why, the cure, the fix, but I did my best to explain what I saw and next steps. And hear their responses and consider them in light of what I saw in that 2 hours in my office.
And of course there are times we may find nothing definite, but we can validate their experience. We can listen. We can recognize when there is something off that just may not be recognized by available tests.
There are many times that there isn’t an exact diagnosis. We can describe the symptoms and those might even have “diagnosis codes” in ICD-10, but we may never know the overarching “cause” for those symptoms or if there is one. BUT, even describing the symptoms and assigning ICD-10 codes provide a “name”.
Like many of my families and patients I have had over the years, I have navigated the waters of the unknown with my health and learning. I know how scary those waters can be. I know there isn’t always an answer, but my objective is to benefit others with my knowledge and experience. Even if it’s just how to navigate healthcare systems or health insurance or a diagnosis/symptom.
More recently, I decided to record some of my symptoms and post them to YouTube to share the journey with others. My hope is that professors, practitioners, and patients can benefit from these in some way.
Would I like to know a cause? A name? A diagnosis? Who wouldn’t? BUT – even if I can’t learn that information – if I can benefit others, then in my opinion I won.
Thoughts for providers
Providers, if you are frustrated by patients seeming “hung up” on getting that “label”, it’s for the reasons I said above. What can you do?
Respect the request – and try to understand
Sit in their shoes a minute
Ask the patient/family why they seem to “want” the diagnosis
Consider whether they experience something you may not see in your office
Use your active listening skills
Consider reviewing the data and scheduling a follow-up
Avoid assuming you know more about that patient than the patient/family (you only see them for that short period in your office)
Empower them to help you see what they see
Ask if there is an insurance reason they need a diagnosis
Consider whether the person could benefit at minimum from an acting diagnosis (if appropriate) to give them access to care that would otherwise be denied
Ask them how what they report is different than previous function (if appropriate)
Ask how it is affecting them in daily life
Tangent. Consider a patient’s background during the appointment
If that patient is an allied health professional trained in the area they are coming to you about, please pause and consider that this patient may be using every tool they know to minimize the effect of their concern in your office. Listen. Think about the tools they might have – objective tools (like a measure of grip strength for OTs) – that you don’t.
An example from many years ago
Over 10 months from 2010 and 2011, I went through over 20 rounds of antibiotics for respiratory infections before seeking a pulmonary doctor. Finally, I went in. My voice was hoarse from all the coughing. I told the doctor (who will remain nameless) that I was going to lose my voice. I asked for someway to help the cough so I wouldn’t lose my voice. (Try being an SLP with no voice.)
The doctor told me I wouldn’t lose my voice. I reminded her of my training. I reminded her of my specialty. I was dismissed. I was in tears trying to explain myself to her.
Fast-forward. The sputum culture returned. It was Methicillin Sensitive Staphylococcus Aureus. I was given an antibiotic. But due to coughing, I lost my voice 24 hours later. I did not regain enough voice to return to work for at least 3 weeks. (Even when I returned, I barely had enough voice to talk through the day.)
I saw an ENT who specialized in voice, who said I had an ulceration on my vocal folds from coughing.
To patients and practitioners
I understand the frustration from both sides. I’ve been there. I’m there right now. I know how scary the unknown is, but let’s work together. Let’s listen.
Practitioners, involve patients who want to understand when reviewing their case. Don’t hesitate to say “I don’t know” or “I need to go look that up”. Just be sure to get back to the patient later.
Patients/families, I know the information is sometimes overwhelming. Don’t hesitate to pause the practitioner, repeat what they said, and as if you understood. As for a list of action items. And tell the practitioner if you have any barriers to accomplishing those items (even time to make those phone calls). Find out how to contact your practitioner. You deserve someone who will listen and advocate for you.
So…again, what’s in a name, a label, a diagnosis? It can be more than a provider might know from access to understanding. Validating a symptom observed goes a long way, especially if that has an ICD-10 code – even if there is not treatment available. And that ICD-10 code is something researchers might look up in the system in the future and look at associated health conditions which could lead to better understanding and treatments.
Yes, that might be a long way off, but again, for someone like me who just wants to help others, I don’t care if it’s 100 years off. If my data helps practitioners and patients learn about health conditions, then I will view it as a win.
Disclaimer. This article is based on personal and professional experience as well as research on counseling patients. This information is not intended as legal advice or healthcare advice. Please see a provider about any healthcare needs. I acknowledge that some people need different approaches than others when receiving information, so again, providers use your informed clinical training and judgment.
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