By Thomas Radcliffe
My wife and I are the primary caregivers and permanent legal guardians of a 10-year young lady who has Type 1 diabetes. She was put in our permanent legal custody several years ago and at this point, we are Dad and Mom to this 10-year-old.
As with many of these children, her condition was pre-existing and her only available Medical insurance is Florida Medicaid.
So we have dealt with the Florida Medicaid system now for the past six years and have had great success in having her needs met. Florida Medicaid is a complicated and difficult system to deal with indeed. We have made it our little advocacy effort to help “fix” and educate the system about the critical needs of the type 1 diabetic children for the benefit of all of the Type 1 children forced to use it.
Responding to issues resulting from a lack of hypoglycemic awareness her endocrinologist prescribed a CGM for her in December of 2008. And we knew that would not be well received by Medicaid. The initial prescription was of course, refused. We took a little time and studied the system and a second prescription was written in July 2009 and we again ran it through the system for pre-approval. It was also denied and we began the process of going through the private provider’s internal appeal processes.
We struggled with the decisions of how much effort to put into this appeal.
In late September of 2009 we exhausted that internal appeal process and filed for a State “Medicaid Fair Hearing”. The basis of that denial was:
“This denial was upheld because the requested item is not covered under the Florida
Durable Medical Equipment Fee Schedule. Medicaid does cover blood glucose
monitors listed under HCPS E607, The reasons for denial are based on a set of
standards. This included Florida Medicaid Durable Medical Equipment Handbook.”
We took the position that just because Medicaid had adopted exclusive lists that that is no reason for denial based on Federal law and past case law.
The administrative hearing (Medicaid Fair Hearing) was held on 12-1-09 and the ruling was in our favor! The hearing officer removed all impediments to paying for the device. However, the case was remanded back to the private provider to determine if the device was “Medically Necessary”.
Although we had submitted all of the documentation requested including the prescriptions, the medical records and the requisite Certificate of Medical Necessity, The decision of Medical Necessity was now in the hands of the private provider. While we were in the “Fair Hearing” Process the private provider had adopted Clinical Coverage Guidelines for CGM devices (HS-138). Our claim of medical necessity was denied under those guidelines.
So we continued forward and filed a second administrative hearing and an appeal of the first order (which results in a de novo hearing in the District Court of Appeals), and we added a twist or two. It was complicated somewhat because this child has had a very good A1c and is obviously, compliant and well controlled. But as we know from the latest studies, these are exactly the children that seem to benefit most form the use of this technology. In reviewing the HS-138 policy we were of the opinion that she met the tests in the policy and that under the policy, the device was medically necessary.
But, we had no device approved so to address the true concerns so we decided to go forward again. We obtained the opinions of several impeccable experts regarding this child’s standing under the new policy and they helped us immensely by reviewing the policy and medical records and gave us their opinions.
We now had opinions, but were at an impasse and it appeared that the only resolution was through again, the fair hearing process.
In preparation for the hearings there were several discussions and we know an outside opinion was sought by the “system” to deal with the opinions we had obtained. We may never know the real reason, but suddenly a miracle happened. As we were preparing to go through the arduous process of expert deposition the private provider decided to cover the device and supplies as a covered benefit. They did the right thing!
I have to believe that Medicaid coverage of the device for children can be used to have a very positive effect on many of the private insurers who still refuse coverage.
We learned several very valuable lessons in dealing with insurance that I would like to pass along:
• Educate, educate, and educate. Many of the bad decisions made by insurance companies are based on a lack of knowledge. When you submit the facts, they may not read it all and may just brush it off, but if you continue forward at some point your efforts may help shape an opinion. The people reviewing these things often are given invalid information. You may need some authority more than your own to actually have it considered.
• Understand the debate you are involved in. You have a responsibility to understand the issues involved, the latest research, and you need to be right and just in your requests. Bad information and greedy requests do more harm than good.
• Learn the process and abide by it. The system in place has certain appeal requirements and procedures that you must follow if the system is to make a valid decision.
• If you are right, do not give up. Do what is best for the child, even if it is difficult.
• Do not assume the “official position” is the only position. In dealing with the many individuals involved in all of the appeals and hearings we spoke with a great number of people within the system, many of who were quite pleased with our final result. Understand that in their minds it is not as cut and dry as we may see it.
• Recognize your responsibility to all Type 1’s to follow through and present only the very best information and arguments. Recognize what you say and do may well affect others down the road.
• Always assume that the individuals you are dealing with are attempting to do the right thing. Because most of them are.
• Use the resources available. We did not attempt to do this alone. We are all members of a small, close community and I have found many people willing to help any of these children in a time of need. Many people got involved in our efforts giving good advice and opinions. Do not be afraid to ask for help, but at the same time understand that you need to do the work. No one can help if you do not put forth the effort to help yourself.
• In all of your dealings, keep in mind that we have to face the challenges of this insidious disease on a daily basis and we have an entirely different perspective than many who are charged with the responsibility of making the decisions. What may seem totally obvious to you is not to someone who does not have your life experiences.
We have received the CGM device and our young lady has been using it now for about a week. We already see the value and know we did the right thing.
We owe a debt of gratitude to many that have helped us along this long path and to many more whom have remembered us in their prayers. For that we are very grateful.
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