An Update from Dad
Sorry I have been so late in providing an update to Sherrin’s web site. Kaci has done such a really unbelievable job in telling Sherrin’s story. My primary goal in providing input to Sherrin’s website was to help other families fight through the system and get the best possible medical care. Frankly, I have learned that the medical system is broken and if you do not fight for your loved one she will not recover to the maximum extent possible. That has been my single focus since Sherrin was injured. We have had to fight to get the care she deserves and, in each and every case, we have come out on top. Because Sherrin was a student and without an income she was authorized MEDICAID and we had to fight that battle. When it was all said and done Sherrin was finally given the 8 hours a night of nurse’s aide support she is authorized under MEDICAID. That fight took a teleconference between the MEDICAID rep in Richmond, the insurance company that administers Medicaid in Virginia, Sherrin’s health care providers and representatives from our local Congressman’s office. What we discovered is that the insurance company hired by MEDICAD improperly reviewed her file and I had to raise a stink for them to reverse themselves. They eventually did. MEDICARE is essentially as incompetent as MEDICAID. What makes it worse is that the rehab facility that Sherrin was going to would not challenge MEDICARE after I presented it with the most recent legal decisions, the appropriate citations from the Code of Federal Regulations, and letters of medical necessity supporting my contention that Sherrin requires skilled therapy for her continuing recovery. With all this information they still discharged Sherrin. Why would they not support my claim that Sherrin requires skilled therapy? It’s simple; if the rehab facility agreed with me and submitted a waiver request for continued therapy to MEDICARE it could take as long as 500 days for the appeal to run its course. By denying the care the rehab facility does not have to undergo this appeals process and continue to provide care when there is a chance they may not be reimbursed. Luckily, because of my military status (retiree) and Sherrin was a student at the time of her injury and my dependent I was able to get her into Walter Reed Military Medical Center and she is receiving wonderful medical and rehabilitation support. The differences between Walter Reed and the civilian health care community are staggering.
Durable Medical Equipment is an ongoing fight. Because it has been over two years since Sherrin’s accident she has been moved from my insurance (TRICARE) to MEDICARE. One day under TRICARE she was authorized a particular piece of equipment and the next day she was not because she rolled over to MEDICARE. Even though TRICARE is a secondary insurance to MEDICARE it will always default in favor of MEDICARE. When you are authorized a particular piece of equipment it is so expensive that it is ridiculous. Typically, the company providing the medical equipment inflates the price so high they can make a profit when MEDICARE cuts the price of the equipment in half. We just got Sherrin a motorized wheel chair and the bill was $30,000. Ridiculous! Frankly, everything about MEDICARE can be characterized as incompetent or fraudulent.
I have researched the different brain injury associations and they are OK, but do not really provide much benefit. They cannot answer the hard questions and do not have the details necessary to give an intelligent response. When I asked them where the best brain injury rehabilitation centers were in the United States they responded with the 16 “model” centers. I explained that I had researched them all and had traveled to 8 of them and came to the conclusion that they were not “model” at all. After a bit of dialogue they all admitted that they had not inspected these centers and were relying on word of mouth. When I asked for help in finding rehabilitation services in Northern Virginia they could not respond. The Brain Injury Association of America told me of a study that they were help funding on the long term effects of skilled therapy for the brain injured. When I heard of this I was ecstatic. But, when I talked to the Doctor who was leading the study he told me that the results would not be released for five years. Not much help at all.
In January, I visited our local Congressman at her office in Washington DC. I explained to her that Virginia was ranked 48th in the US for treating TBIs, that Virginia MEDICAID sends its more severe TBIs to Massachusetts rather than caring for them in state citing insurance issues, that both the companies administering the MEDICAID and MEDICARE
insurance plans in Virginia were incompetent, and that it was fight each and every single day to get the support your loved one is authorized. She listened attentively and was shocked with what I told her. I am very glad she took my call and has the information on the brain injury situation in Northern Virginia. Hopefully, she will be an advocate.
So, what do you do? The answer is simple—fight! You have to work harder than the bureaucrats running the program. Let me give you an example. When Sherrin first was injured I was told by her case worker that she could only go to an acute facility and when she emerged back into consciousness she could go into rehab. If she stayed in a vegetative state she would stay at the acute facility. She further told me that Sherrin was not ready for Shepherd in Atlanta or National Rehabilitation in Washington D.C. She provided this guidance without ever coordinating with either facility. In fact, she had never been to either facility. National Rehabilitation is less than 20 miles from the hospital that the case worker’s office is located and she had never taken the time to visit there. Not accepting this guidance, I was able to get Sherrin into National Rehab and her recovery began. One month later I went to Shepherd and discovered that they would have taken Sherrin in immediately. What the case worker did not know or cared to find out that the first few months after a brain injury are the most important. If Sherrin had gone to the acute facility, as recommended by her case worker, she may have never emerged back into consciousness. Frankly, this case worker is indicative of what we have witnessed throughout this journey. The lesson learned for us time and time is to question every decision. Do not depend on the medical community. If you do you will likely not get the care your loved one deserves. As far as this case worker is concerned I hope there is a warm place in Hell for her. How many other families have followed her guidance to the detriment of their loved one? I will never forgive her.
The good news Sherrin is thriving and continues to recover. I took her down to Richmond in February to meet with a noted neurologist who focuses on brain injury. His comments to me was that he wanted to take Sherrin on and that she has unlimited potential for further recovery. This would have never occurred without the care Sherrin has received from her Mom and Kaci and my challenging the recommendations of the medical community. Mother’s love is essential.
The problem with the medical community for the brain injured is that it is uncoordinated and skeptical. The Doctors are highly trained, but are limited to the time they can devote and the time available for the patient to receive care. They also do not think out of the box and explore alternative treatment regimens. If you believe the brain is an organ and that it can be fertilized then why not use neutraceuticals to stimulate the growth process? From the day we put Sherrin on neutraceuticals until now she has not been sick, has been very healthy and alert, and continues to thrive. With the exception of one noted neurologist all others have been skeptical. One even stated that it was merely “expensive urine.” Sherrin’s recovery supports the need for neutraceuticals. Finally, from a business perspective the term “treat and street” comes into play time and time again. Hospitals are out to make money. It would be foolish not to recognize this. What is important is that if you have done your homework and know what is authorized for your loved one the hospital will likely yield to your requests. But, you must be prepared to fight and you must do your homework. To accept the first recommendation that the medical team provides you may not be what is in your loved ones best interest. Always get a second opinion. Finally, if you disagree fight for what is best for your loved one. You have nothing to lose and everything to gain.
Sherrin’s journey continues and we will continue to fight for her. The best news possible is that we have her back and she continues to get stronger and improve. For those medical professionals that helped her along her journey we will be forever indebted. For the bureaucrats we look forward to the next fight!