Treading Water; Fighting to Retain Function

Medicaid’s website disaster put many things behind schedule and just as I had feared one of them was my trip to Vanderbilt. Although my current GP did fill out the necessary paperwork this time it was Medicaid that dropped the … Continue reading

Emory Healthcare Denies Kidney Transplant to 2 Year Old Based on Father’s Parole Violation

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.

 

Georgia Medicaid Web Platform 2.0 Causes 4 Thousand Recipients to Fall Through The Cracks!

man falling through the cracks

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.

Making Plans

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.

Giant gears

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.

Technical Issues

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?

locked out

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.

Diagnosis is a Winding Road; Finally Getting Somewhere!

Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading

One Year Later Emory’s Poisoned Records Still Block Access To Care

The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological … Continue reading

Plugging The Loopholes in Civil Rights/Patients’ Rights Laws

All too often the mistreatment of patients with disabilities/medical conditions/chronic illness is regarded by society as a lesser offense (or not an offense at all) and its survivors’ resulting trauma not acknowledged by the general public, including those agencies whose … Continue reading

Art is My Therapy; How One Woman Deals with Trauma from Abuse By “Medical Professionals” and The Daily Grind of Chronic Illness

I’ve been so busy working on the out-of-state referrals to upper level clinics and just living my life to notice why I’d been crying more lately and thinking more about the incident at the ER on December 3, 2015 and … Continue reading

Giant Health Product Giveaway Nov. 23rd – Dec. 3rd! Lots of Prizes!

Chronic Illness Bloggers is hosting a big giveaway jam packed with all sorts of fun and healthy prizes! If you’re anything like me, you may want and need a lot of items for your health that you just can’t afford. … Continue reading

GA Medical Board Fails To Take Disciplinary Action Against Doctors Involved in Abuse and Corporate Cover-up

It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to … Continue reading

Trump Presidency Bad For People with Chronic Illness/Disabilities

capitol-diagram

Tuesday November 8th’s 2016 political upset was a wake-up call to all of us in the chronic illness community that we have our work cut out for us when it comes to our quest for respect, equal representation, and full inclusion (which includes having our medical needs met in a timely manner).

The worst of it is not just the opinions espoused by Donald Trump, but that these same bigotted opinions appear with such frequency among average citizens in modern society, and that they can and do drive the making of public policy; AKA…the rules that govern our real lives! 

Despite that many are uncomfortable discussing and even thinking about politics, the reality is that where the rubber meets the road policy gets made with or without our input.

stubborn-as-a-mule

The challenge in the face of such a punishing blow as we saw earlier this week is to stay engaged and not give up the good fight for what we know is right. Better that policy be created with our input than without, and under our watchful eye than in the secrecy of smoky back rooms.

Ari Ne’amen, the President of Autistic Self-advocacy Network, calls the election of Donald Trump “a disaster” and predicts that if Trump actually follows through with the things he has stated he plans to do once in office the risk for people with disabilities is serious and very real.

We already know that one of Donald Trump’s big goals is to “repeal Obama-care” the Affordable Care Act. Along with this is the Medicaid expansion for people whose income is too low to qualify for the Affordable Care Act Insurance Market, large numbers of working poor who otherwise are cheated out of health insurance benefits by greedy big corporations who employ them often at starvation wages, cut their hours, and pull other ploys to avoid providing them any long-term job stability and financial security just to pay the top brass more. He has even stated that he’d like to do away with a minimum wage altogether! (Clearly he’s not looking out for the American worker’s best interest, but instead the interests of big corporations).

if-there-were-no-minimum-wage-employers-would-pay-nothing

We already know that Donald Trump is unsympathetic/unempathetic to the plights of undocumented immigrants who have often had to flee deadly drug cartels and other terrorists on an emergency basis to come to the US for safe refuge.

His comments regarding Latinos are especially heinous referring to them in such derrogatory terms as killers and rapists , casting aspersions upon the Mexican Government as if to imply that infiltrating our country with unsavory characters were their intent! 

He kicked a New York Times reporter of Latino descent out of an Iowa news conference and had him forcibly removed, and he has made derrogatory remarks about former candidate Jeb Bush implying that he was unfairly biased for Spanish speaking people because his wife was Latino. Most distubing of all anti-Latino comments was his response when confronted with a situation in which a Hispanic man was beaten in his own home by Trump supporters; stating that his supporters were “passionate”.

No, I’m sorry to break it to His Highness, but THAT’s not merely “passionate”. THAT is a HATE CRIME! “Passionate” is peaceful protest, or a civil debate of the issues.

His blithe response and gross minimization regarding this act of discrimination, hatred and violence is dangerous in that it has the effect of normalizing something that should never be socially acceptable in a civil society! It tells others out there who do not want to control their anger and who believe the rules and laws don’t apply to them that violence is OK as long as you are doing it in the name of a belief (however instrinsically immoral it may be). The now President Elect almost seemed to gloat over the fact that such violence could be passively incited in his name.

We must ask ourselves; if he’d turn his head to this sort of hate crime how many other civil rights issues will he turn his head to as President?

And it’s not only immigrants he disrespects. It’s women, too. I think most of us have seen at least a few off-color comments he’s made on the news or on Twitter, coverage of his intention to reduce a woman’s right to free choice and other equal rights issues for women such as opposing equal pay in the workplace, but you may not have been aware of this very graphic video which caught blatently sexist and denigrating comments he made about/against women here .

trumps-denigration-of-women

Notice here that Trump dismisses the severity of his salacious remarks and fails to take responsability for his clearly treating women as though they were objects to be conquered for his own narcissistic gratification. He only apologizes that anyone “was offended,” not that he did it. Sound familiar??? It’s the same sort of non-apology Emory Healthcare issued in their letters which stated “sorry you aren’t satisfied.”

And speaking of big corporations; Trump has on numerous occasions stated his intention if elected to roll back regulation on big corporations, so it is likely that what happened to me is not the last time this atrocity will happen to an innocent patient, and the offending healthcare corporations will get away with it. If anything our country is in need of more regulation of big corporations; not less!

corporate-greed

They’re already running rough-shod over us individuals and the fox is charged with guarding the henhouse leaving big gaps in justice for those with little power in our society. Funding has already been cut to state and local programs such as Legal Aid, and to federal programs charged with going to bat for people who find themselves discriminated against and stuck out in the cold.

As I have outlined in earlier posts; people with Autism/Aspergers and other little-known and poorly understood conditions that frankly doctors and healthcare systems would rather pretend don’t exist than to treat receive short shrift when it comes to services. They are considered costly and time-intensive and therefore a bother to such corporations, so there is much pressure to down-grade the level of care to individuals with such conditions, and if that doesn’t fly they are dumped summarily with very little public outcry resulting and next to no real advocate.

Considering that the numbers of people with many of these (as corporate healthcare sees them) “nuisance” conditions are rapidly becoming the majority and (it goes with out saying) these are a formidable voting block. This is what we must impress upon the masses and upon Congress in our efforts to educate and consciousness-raise.

While our kind may still be considered less crucial/less important and our views less influential in forming our country’s priorities, we are a rapidly growing segment of the population and one day soon we will be a demographic that politicians wish to court.

Trump seems to have a penchant for insulting people with disabilities employed by the media. I guess deep down (well not so deep really, LOL) he doesn’t believe that people with disabilities can be strong contributing professionals of news agencies.

During an NBC News interview he slammed a columnist, Charles Krauthammer, who is paralyzed from the waist down specifically using his disability as the butt of his mean joke; “Then I get called by a guy that can’t buy a pair of pants, I get called names? Give me a break.” It wasn’t enough for him to insult the man’s stance on the war in Iraq and other topics, and to call him “underrated,” but to attack his having a disability and his needing help for that disability is beyond the pale. 

If anyone has any doubt that a Trump Presidency is harmful to the interests of the ill and disabled you have only to watch this clip in which he mocks in one of his speeches the spasticity in a reporter’s hands, Serge Kovaleski who has arthrogryposis, a joint condition.  

He later goes on to accuse him of “grandstanding about his disability.” Further, he questions “his level of intelligence”, painting him as a nobody that is too unimportant for Trump to remember. Nice attempt at gaslighting, Trump, but a big fail; the sarcastic impression shown in the above video speaks for itself.

Pretty appalling, huh! You might expect this kind of juvenile banter from a prepubescent hamming it up and trying to garner some street cred with his friends/peers by picking on those he views as easy targets, but not from the (now) leader of the free world (soon to be alot less free than before if we don’t stay on task in standing our collective ground steeled against the inevitable attempts to cut corners on those he deems not viable enough). 

gavel

Trump’s assault on disabled people isn’t even limited to his liberal detractors.

heavy-artillary

Even veterans with disabilities have been subjects of his particular type of abuse, including John McCain about whom he openly stated that he didn’t understand why people considered him a war hero after being captured and held for years in a prisoner-of-war camp, forced to endure horrendous and permanently crippling torture. Trump’s audacious comment that he “prefers soldiers who were not captured” is another telling remark of honking disrespect and lack of empathy which gives a clear indication of his values, and motivations.

stress-and-strain

It strongly hints at his predatory and orwellian view of the haves versus the have-nots; the viewing of the underdog as somehow less viable, therefore less deserving than his more advantaged counterpart. His singling out of various groups to be badly regarded thus badly treated is another version of the concept of Untermenschen; a term coined in Nazi Germany during WW II; (translated: Under Man, or sub-human) made new again.

trump-american-hitler

The type of thinking Donald Trump engages in is of the same mind-set espoused by Hitler and other such dictators who went on to carry out their horrendous bias in policy. It seems I am not the only blogger who sees that parallel!

Michelle Obama stated it very accurately in a speech made earlier illustrating why Donald Trump is wrong for America.

She says; “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strength and their contributions.”

That, my people, is the root of discrimination; the inability to see a certain demographic’s value and the inability to view them as bringing something important to the table.

This man clearly lacks the maturity and seasoned professionalism (not to mention the experience) required for the job of President of the United States of America, and much more than merely annoying, his rhetoric is dangerous to those who due to medical conditions require accommodations in order to have as much quality-of-life as possible. In politics, as in life, one might be able to con (or buy) one’s way into a job, but doing the job day in and day out is a whole other kettle of fish! 

trump_fails

It’s appalling that anyone would want somebody like this to be President, and just as appalling to hear some of the excuses being generated for his prejudices and blatant disrespect for those who are less advantaged than he. (Note that he is constantly telling us how wealthy he is. And how does that at all qualify him to run the country which includes mostly people who are not wealthy and whose lives in no way resemble his?)

trump-really-rich

Maybe in time those who voted for him will see that this was a big mistake and that in the end this is not a man who represents their values, and maybe they will move for a reversal. (I hear that Michael Moore predicts he won’t last the 4 years). Only time will tell, but those of us who’ve known this all along must continue to shine a light on the humanity that is lacking and the restoration of which is so badly needed, and keep working to improve things for people with disabilities/the chronically ill.

For those who are interested in an update on me; I will get one up soon. For a number of reasons I have found it hard to write over the past month. I had a spoon left tonight and just felt that this topic was screaming to be put down on paper given the timeliness of the election, as its ramifications affects all of us.