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The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.
Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.
What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.
Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path. Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.
One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late
A local news team has covered the story. See this footage below;
At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.
Each year Medicaid recipients in Georgia are reviewed for continuing eligibility. Several years ago Medicaid, Food Stamps, and TANF (Temporary Assistance to Needy Families) was streamlined from a very laborious system requiring a regular visit to your local branch office of DFACS; often a day-long wait in the overcrowded waitingroom, then to be called into a cubicle and asked a series of questions 3 repetitive times. This was a long and arduous and dehumanizing experience that resembled more of an interrogation than a recertification, and for those of us with disabilities, particularly chronic illnesses it was exhausting and left us feeling even more ill and in pain than when we’d left the house that morning.
The new computerized format, known as Compass that replaced this terribly inefficient dinosaur of a process was amazingly user-friendly and easy to navigate. New changes in a computer database as large as this one usually don’t go quite as smoothly and often cause more problems than they solve, but Compass was an exception. It ran relatively seamlessly for several years, and recertifications were easy to complete in a matter of minutes, no fuss, no muss, but then they had to go and fix something that wasn’t broken.
And this was when the gears came to a grinding halt. I had received a letter by mail two weeks earlier saying that it was time to recertify. It told me to go to the website to complete the online form by September 31st to keep my case open but there was no indication that the website nor its location had changed.
Then on September 18th a got a rather urgent-sounding two duplicate letters stating that the caseworker needed my bank statements and for me to go to the website to complete the online recertification form by the end of the 18th (on the day I received the letter). Surely this was a mistake, but in any case I went to the Compass site. Once there, I found a message on it stating that this particular website was no longer being used and directing recipients to another website called “Georgia Gateway”. Georgia Gate-keep would have been more apropo. As I went to log in I was told that my password was incorrect. I tried again, and then again, this time with all lowercase letters, but then I got an error message saying that I was “locked out” and to call the support phone number above.
I was pretty sure of my password but figured maybe this was just a simple case of a letter typed in wrongly and that I just needed a password re-set. This turned out to be much more complicated than I thought, and it asked 2 security questions (but only the first one actually listed a question. The second had the number 2 by it and no question but it was still a required field. It was soon clear that this was an unsolvable conundrum, as the message swore that my pet’s name was incorrect. I only have 2 pets, and neither one worked, and then there was the second non-question that they insisted I answer. Was I supposed to guess the question?
I called the number listed as their technical support line and after about 4 or 5 rounds of “options” got a message “Due to unusually high call volume our representatives cannot answer this call. Please try your call again later…Goodbye” and the phone then hung up.
I wondered if this was someone’s twisted idea of a joke, or maybe it was another of a long list of hurdles placed here by local politicians who think Medicaid should be done away with. At the time I wasn’t seriously thinking this but after more details revealed themselves I’m not so sure that was very far from the reality.
I called the tech support line back several more times in the days that followed; once or twice reaching someone who said they were just the “answering service”, knew nothing, and could only pass on my message, have someone send me a password re-set in a few minutes (never happened), and have someone return my call within 48 hours.
Next I called the caseworker who also was not answering her phone, and eventually after 48 hours had come and gone, her supervisor who was not answering her phone either.
Finally I reached someone on the technical support line who told me that creating a new account should correct the problem and that I should then be able to log in and access the necessary form, but this didn’t work either and I ran into the same problems as before. She had no idea what to tell me, only guessing that somebody must have changed my information without my knowledge and that only “Medicaid” could fix it. I told her that I thought this phone line was part of Medicaid, to which she replied that her company was really just a subcontractor. Oye vay!!! If one more person sings the praises of privatization I think I will throw them out a window! This wild goose chase I was sent on was completely unecessary and this middle-man, clearly no help at all, merely a buffer to shield the agency (Medicaid) from full accountability.
I faxed the bank statements to my Medicaid caseworker along with a coverletter asking that she confirm that she got them, and to tell her that I had no way as of yet to acess the website and complete the form, and asking that she honor the first letter I’d received listing the deadline of September 31st, (not the 18th, which was a virtual impossibility).
I told her I didn’t know how long it would take for this to be straightened out but that I did not want to be penalized and lose my benefits because of a technical error that I had no control over. Again I called the technical support line and got a female representative who told me that she’d have someone call me back within 48 hours. I’d heard that line before and wasn’t sure whether to believe it this time. I asked if she was sure somebody would call me back and reiterated how vital it was that I not lose my benefits, as I have doctors appointments coming up.
Then finally the morning of Sept. 21st at around 8:00 AM I got a call from a woman in the department that handled the back end of the site who informed me that the reason the website wouldn’t accept any of my identifying information is that they were supposed to have transferred data over from one site to the other and they had failed to do that on 4,000 Medicaid recipients.
Apparently nobody was answering their phones because this had caused a major crisis and they were being flooded with calls from clients who were under the gun to recertify and no way to do it. She seemed genuinely not to know how or why this happened (I had the impression she was probably in some supervisory position; not on the team doing the data transfer). She offered to send me a paper form by email and told me I could either take it in to DFACS or fax it to the caseworker.
Since I really had no way to get there and am not well enough to sit up for hours in a crowded waitingroom I opted for the latter. I got the attachment, filled it out, and faxed it in that day along with a second coverletter asking for confirmation that everything was complete. I don’t know yet what the outcome will be, but I just hope the problems with the website do not extend to the entire database and that the records on each recipient’s case are still in the system. If the entire system was updated then the problem might be alot harder to fix, potentially cutting thousands of people off Medicaid erroneously at the most crucial time.
A search online made me a little dubious, as it reveals that Medicaid in Georgia has been under threat for some time. Its Chief, Linda Wiant and Deputy Chief , Lynnette Rhodes both suddenly resigned in August without explanation.
As an aside it is interesting to note that in 2017 nationwide 57 major hospital officials have tendered their resignations. Could there possibly be a correlation between fiscal trends in Medicaid (and possibly Medicare as well) and the high turnover among hospital/health corporation CEOs? Possibly. We’ll have to see how this shakes out and whether their replacements are pro-patient or pro-corporation.
Due to all the confusion cause by the new Gateway system it’s anybody’s guess as to whether recerts were processed or not. My son had to go into his local DFACS office to get his straightened out as he doesn’t have a fax machine and even after meeting with a caseworker in-person still needs to go back a second time. Nobody is answering their phone nor returning phone calls. I did finally reach the supervisor of my caseworker’s supervisor by email and he merely forwarded my email to the caseworker who wasn’t responding in the first place. That was about 1 week ago and she still has not confirmed she has everything I faxed her.
The worst by-product of all of this is that after my current GP finally got the paperwork done and I was scheduled to go to Vanderbilt on October 4th, I had to reschedule because Medicaid (predictably) failed to notify my as to whether the doctor’s requests were approved for me to be seen out of state on my Georgia Medicaid (Secondary to Medicare), and for the agency affilliated with Medicaid to cover my travel expenses. Seeing as there are only 5 Autonomic specialists at Vanderbilt’s specialty clinic, they are often booked up for several months in advance, so this has set me back once again. Now I will have to wait until January. I just hope that Medicaid will honor my doctors’ paperwork with the small added change of the date and not require her to do it all over again. It’s hard enough to get most doctors to do it once, let alone twice!
Nobody seems to know how or why this snafoo happened nor who exactly is responsible for fumbling the ball, (or Medicaid’s not telling). Mainstream news sources have been surprisingly silent about this rather large mistake, but I hope that some of them will take an interest and do follow-up news stories as more information becomes available.
On a happier note, there is some hope on the horizon with a few new developments but I’ll cover that in a seperate post.
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