PROMISING PRACTICE: NAVIGATING MEDICAID INSURANCE COVERAGE ACROSS STATE LINES

BY LAURA GEORGE

If you have chosen to read this article, then you either have experienced a problem with Medicaid and your child, have many unanswered questions, or are hopeful that there is a positive story out there on the topic instead of the negativity you usually hear. A promising practice is a created innovation that, based on early application, accomplishes an outcome, which then has the ability to become a common and widely used practice. Hopefully this "Promising Practice" will gain momentum and help anyone who has an exceptional child with state-to-state insurance questions.

My story begins with being not a professional who works with people with disabilities, but as a mother of a child with a rare autoimmune disorder, allergies, and a rare allergy called colophony. Colophony simply is an allergy to pine tar or pine rosin which can be found in food, medicine, flooring, walls, markers, clothing, pesticides, corn products, perfume, and more. While most have skin issues with it, my child reacts to the fumes given off. Yes, this means grocery shopping can be an easy environment for her to have a reaction to. In her case, it is not the breathing that stops; it her body shutting down due to instructions from her brain.

So when an amazing opportunity came up for us to move to Florida, into a home that would be by design much freer from pine tar or pine rosin amongst many other benefits, we jumped at the chance. Buying a home is stressful at best. But it could not compare to the level of stress and concern felt during this time of COVID-19, wondering how the insurance coverage would continue on in a new state.

Some of you may have learned by experience, that when in a disaster, being evacuated to another state meant that your child suddenly lost access to the Medicaid insurance program they were in. So if there was an emergent medical need, the cost was out of pocket. Additionally, finding a medical professional who was willing to see a child with disabilities without insurance, can be extremely hard to find. Is there legislation addressing this problem? That will be answered later in this article.

About a month prior to the move through calling my current state Medicaid office, it was learned that my child's insurance would have to be turned off, we move to the new state, find the new program, go through the application process, wait for approval, navigate the payment time frames, wait for the proof of new insurance to arrive, and then wait several weeks to see a doctor as a new patient. Making a personal vow, I promised myself to not let my child endure the frustration of not being able to see doctors for her health due to lack of insurance. It was not known at the beginning of the journey that the vow I made would require intense proactive aggressiveness, patience, and dutiful follow-up.

First, I called the Medicaid program in my state, and had a frank conversation on what was occurring, what was needed for my child, and what I hoped to accomplish, which was having back-to-back insurance coverage over state lines without interruptions. No changes were made at this time. Then, I called the Medicaid program in Florida, having the same conversation as before and again, repeating the desired goal for my child. During this time, we had not moved to Florida, but I was able to begin the application process about a week before the scheduled closing on the new home. A few days later a call was made to verify that Florida received the application, my daughter's story was told again, and the next steps along with the expected time frames were obtained. The contact in my state was called, and kept up-to-date with each step I made. On the day it was expected that the Florida application was to be approved, another call was made, her story was again repeated, and it was learned that she would be referred to another section of the state Medicaid program as her need for insurance coverage was critically important. Again, time frames for understanding when this step would be completed were obtained and the urgency explained. Another update call to the contact in my state was made.

While all this was happening, the closing on our house occurred and, two later days, we moved down to Florida. Upon arriving in Florida, another call was made to Florida's Medicaid program, to get the status of my daughter's insurance coverage. She, "is in the system," I was told. Yet, in my mind that didn't mean much. I wanted proof. Those insurance cards were needed. My daughter's story was again told to yet another customer service representative in Florida, next steps and time frames were obtained. My update call was placed. But this time, because I was now calling from Florida, there was a change. "Her file is now closed due to living in Florida. Her case will remain open for a few more weeks; to the end of the month, to make sure she has coverage just in case."

Privately (even at this stage) I was clinging to hope and faith that my child would not be caught without insurance and have to endure the concern I was trying to hide. Already in the first two weeks at our new home she had several small colophony reactions (at the grocery store, the bank, the school, and the peel-and-stick flooring sitting in the garage), but fortunately I was able to help her through them.

Another call was made to the Florida Medicaid program and I was surprised to learn of a procedural step that not any of the representatives I had spoken with had taken the time to mention. Because her initial insurance payment was made after the 14th of the month, we had to wait until the 15th of the following month before her cards would even be issued. Card issuance took an additional 10 days to process, and then another business week at least before the cards would be received. Thus, at the current rate, the cards might not arrive until after the old state's insurance was turned off. Feeling discouraged, I allowed a few days to pass and another call was placed to obtain the current status of the insurance coverage. This time, after repeating my daughter's story, I was told, "Your daughter has been covered by Florida for the past two weeks. Let me get you the phone number to her assigned insurance company." Without wasting a moment, I immediately called the assigned insurance company. I gave them the state assigned account number, told them my daughter's story, and they gave me her insurance account number, assigned doctors, and other important information that I would need to make sure she had the appropriate care and coverage.

However, I still did not have the insurance cards. There were only handwritten notes on paper. Where was the proof? The representative who I spoke with offered to help out and expedited the process for sending the insurance card so that my child could meet with medical professionals quickly for her autoimmune issues. Five days later, the delivered mail held the answer to my dogged persistence in making sure my daughter would have insurance coverage she and all other children should have in this situation. Holding the envelope in my hands, I stared at it somewhat shocked that this goal for my child would be complete. With shaky hands, I tore the envelope open and the insurance card was revealed in all its glory. Immediately I showed it to my daughter and tears ran down my cheeks.

Instead of the average four-month process for canceling one state Medicaid insurance program and connecting with another, the whole process took about 49 days. It was started two weeks before the house closing and maintained through the closing process, moving, and arrival to Florida. For each and every call, the customer service representative's name, number, date and time of call were noted, the bullets to the conversation, the steps that were to occur, the time frames to be observed, and concise preface to each conversation of my daughter's story given with her need for the insurance approval process to be sped up. At the end of every time frame given, a call was also made to confirm that the prior step had been completed and the proper paperwork had been processed. Being patient, cheerful, concise, dutiful and, most of all, aggressively proactive were the most helpful skills to have in making this Promising Practice occur.

Earlier in the article there was a hint about possible legislation to correct this in a disaster. The "Disaster Relief Medicaid Act (DRMA)," according to The Partnership for Disaster Strategies (PIDS) website ( reaadi.com/what-is-drma) states among other items that the act is being created to, "provide uninterrupted access to Medicaid services when recipients must evacuate across state lines, increasing health maintenance and community living and preventing institutionalization during disasters." This bill was introduced in the 115th Congress, was initiated by PIDS, and written in conjunction with another bill called the, "Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI) ( reaadi.com/what-is-reaadi)," which among other items will, "work to provide solutions that help individuals maintain the health, safety and independence before, during and after disasters," along with supporting DRMA. For more information on these pieces of legislation or for other questions, call their Disaster Hotline at (800) 626-4959.

While my child may not have some of the more serious medical conditions out there that, sadly, occur to other children, having to contend daily with immune reactions can be concerning, let alone adding COVID-19 to the situation. It is my deepest hope that by sharing this experience publicly, that it will become a widely accepted Promising Practice and help at least one other family with an exceptional child. With intense passion, I hope the above acts are passed into law, so children everywhere can still maintain their health, independence, and well-being regardless of being in a disaster or moving from state to state.•

ABOUT THE AUTHOR:

Author of Emergency Preparedness Plan: A Workbook for Caregivers, People with Disabilities, the Elderly and Others, Laura George is an Emergency Management Disability Liaison and sits on the National Center for Independent Living Emergency Preparedness Committee [ NCIL.org] as well as other national, state, and local committees. She has assisted in a variety of disasters spanning from Colorado to Florida and back. During the last 14 years, she has devoted her time to the idea that emergency design needs to include everyone. Her spare time is spent with her daughter (PANS/colophony) and dog, Turkey.