I just want to make sure I have this completely straight. The government program we’re eligible for to help cover Connor’s insurance premiums really needs EVERY SINGLE EOB from 2012? Okay, kind of a pain, but call to United Healthcare made. Wait…you mean the program that I called on their assistance line weeks ago that never called me back? You’re telling me that a government worker who doesn’t have time to return a phone call to a concerned mommy is going to read all THIS before they can approve us?
It must be true though. It’s not like these programs for people with disabilities and health problems would ever make people jump through hoops to discourage them from applying…
I’m still here, even in the midst of all the awesome guest bloggers I’ve had so far this month for TSC Awareness (still accepting guest posts). You might remember me from such posts as Bite Me, United Healthcare or Bite Me, Medical Billing Department That Won’t Call Me Back.
The last week has been really busy. I’ve been doing some freelance writing, which has been immensely rewarding in all ways but financial. But if I keep it up, I’ll have that Italian villa by the time I’m 127. I write for the parenting and education divisions of an online media company. No seriously, I write about parenting in, not one, but two locations. Makes you rethink your Google searches, huh?
The Georgia Step Forward For a Cure took place on Saturday May 18 at Marietta Square. So far it has raised $70,000 and counting–thank you Dee and Reiko for organizing this year after year. I was also named as the new chair for the Atlanta/North Georgia TS Alliance, which I’m pretty excited about. Sarah, a reader who has been following along with the guest bloggers, asked me if I would be there. I told her to look for the obnoxious yellow shirts. She found me.
Connor is doing well; he’s still progressing, although it can never be fast enough when your kid is delayed. We just hit 14 months, and we’re hoping he’ll crawl soon. He can hold the position if we put him in it, it’s the moving part that is the problem. He can move backwards when he’s on his stomach. The problem is, he doesn’t ever want to be on his stomach. He will expend more energy trying to flip himself over when I have him wedged in on both sides, than he will to move a couple feet. He can also stand with minor support, but again, we have to put him in the position. He doesn’t pull himself up yet. I’m also desperately hoping to hear some consonants soon. He has mastered uh, and quite frankly, at this point he can add a ffff and a kkk and I’ll be the one parent that’s thrilled.
We recently increased his meds when it seemed some sort of seizure activity was breaking through again. It helped, but I still occasionally see his eyes go up and linger a few seconds, or he’ll stare off to the side with tightly pursed lips. They don’t seem to have a lingering effect like previous seizures though.
His delays do seem to have created the very player of son I swore I wouldn’t ever raise. I’ve never formally announced his health issues in music class, although I also don’t hide it. Some people have become aware as the music teacher is also his music therapist, and they have overheard us talking. I also wear my TSC shirts to class. But some may actually believe that I am such an incredible disciplinarian, that I have actually trained him to never leave my side (easy to believe when you’ve never seen him try to empty his entire bottle into his belly button). So there he sits, very cool, very “you come to me, I don’t come to you.” And the girls, oh yes, they crawl right over. They can’t help themselves. He’s so James Dean, if James Dean traded his cigarettes for music sticks.
I’ve also been looking into just how young kids can start gymnastics because it would be a shame for Connor to ever lose the ability to do this:
We might be looking at a career gymnast. Of course, he has also shown an interest in dentistry.
I haven’t checked, but I’m guessing mental healthcare is not well covered by my insurance policy. I assume this as United Healthcare is currently trying to push me over the edge, and clearly they don’t plan to foot the bill.
United Healthcare has denied our appeal of their denial of Connor’s helmet. Apparently, while some devices are covered, this helmet is an orthotic device intended to “change the shape of the body” and is specifically excluded. Soooo, it’s just a silly fashion statement I guess. Chris and I are just so ashamed of the flatness of the back of Connor’s head that…oh, no, wait a minute. His head shape didn’t particularly bother us. His neurologist recommended it, wrote the prescription, and his physical therapist and pediatrician concurred that it was good idea. Well, I’m no doctor, but I’m guessing they would have told me to buy him a hat at Target if they were just trying to create the new Gerber baby.
So here we go. Appeal number two, complete with letters of medical necessity. Bite me, United Healthcare. Thank you for continuing to waste my time. I also spoke highly of you throughout 2012 when Connor’s medical bills hit somewhere close to $400,000. Sure, we hit the out-of-pocket max and that sucked. But somehow, when looking at six-figures, a standard in our twisted healthcare system, $7,000 suddenly feels like pocket change. Even when I’m no longer working.
But now you’ve left me focused on this $3,000 “fashion statement” and our substantial premiums we pay every month.
I found this as part of your Mission Statement on your website. Check it out:
Walk in the shoes of people we serve and those with whom we work.
We believe: In order to achieve the full potential of our enterprise in its purpose, to Help People Live Healthier Lives, we must fully understand and align with their needs and realities.
We value compassion: We will walk in the shoes of people we serve and those with whom we work. We celebrate our role in serving people and society in an area so vitally human as their health. We must be truly compassionate and genuinely understand, feel and identify with their needs.
We behave: We will actively listen to fully understand and genuinely empathize with people’s realities. We will then respond in service and advocacy for each individual, each group or community, and for society as a whole.
And may I add one more part? We will not add stress to the lives of people who have family members with chronic illnesses and health conditions.
You can help with this further by paying our doctors and hospitals in a timely manner. I don’t why it took almost a year to pay our neurologist for some of his services. I don’t know why when Connor first came home from the NICU, I received repeated phone calls from the hospital to call you and find out why you weren’t paying up. I didn’t need that.
I am an incredible multi-tasker. I am currently writing this blog, on hold with United Healthcare, and having a mental breakdown. Congratulations! You f*&^%$# finally made me cry. I’ve been pissed. But you hadn’t made me cry yet. That took a conjoined effort of United Healthcare, Optum RX, and Accredo Pharmacy.
It started when we got a letter from United Healthcare that they were switching from Medco Pharmacies (which houses Accredo where we get Connor’s Sabril) to Optum RX pharmacies. All mail order prescriptions should automatically switch over. Of course this raised my cautious red flags. So as soon as the change happened April 1 I called to check the status. After talking to a couple different people, it was established that Optum doesn’t carry Sabril (vigabatrin). I was referred back to Accredo. “So everything stays the same?” I asked. “Yes.” I was told. So today I called Accredo to refill the prescription. First time it picks up to silence. So I hang up and call again. Someone answers this time. They would not fill it as my prescription had been transferred over Optum. “Oooookay. So I call them to fix this?” “Yes.”
I call, listen to more piped music, and give all my personal info twice more to Optum to be told that it’s on Accredo to call and ask that the prescription be sent back, and that they should have offered to do so. Call Accredo again. Again, their line picks up to silence, and I have to hang up and call again. More holding. I tell them that they have to call Optum and get the prescription back. They tell me they can’t because I have no active insurance with them after March 31. They still can’t fill it. “So I call united Healthcare and tell them to do what? What exactly do they need?” I’m told to call UH and ask them to open an active account with Medco so Accredo can fill the prescription.
I call United Healthcare, more holding, more giving all my info, lots more holding, trying to explain, getting transferred, and I end up back on the phone with someone at OptumRX again. NOT what I asked for. He again starts the process of refilling Connor’s Sabril. “But two people told me you don’t have it. You’re saying you can fill it now?”
“I have it right here. I’ll take care of this for you.” I wanted to hope for a second, but deep down I knew where this was going again. “Oh, we have the prescription, but we don’t actually have the med.” Yes. Exactly what I’ve been saying. YOU have the prescription, but can’t fill it because you don’t have the med. Accredo has the med, but doesn’t have the prescription or authorization.
Finally, I do what I should have done all along and call SHARE, who works with the manufacturer to deal with prescriptions. They are now working on getting United Healthcare to give an authorization to one of their participating pharmacies so we can refill his prescription. Obviously who I should have called first, but for the love of God, people aren’t psychic. Those of us outside the medical world don’t understand the inner workings. I don’t fully understand the Lundbeck (manufacturer)/Share/Insurance connection. i just know my kid needs his stupid medication. And nobody offered me any instruction on how to handle this. All I got was a letter from my insurance making it sound like a simple switchover.
I guess I am not meant to understand this world of medical mysteries. I suppose I will never know the following:
1. Why a mail order medication can be so difficult to get your hands on, seemingly more difficult and a kazillion times more expensive now than back when people had to get it from Canada because it wasn’t approved here.
2. How a cranial remolding helmet can appear to be covered, I can be charged our uncovered 20 percent, only for United Healthcare to later deny the claim, forcing time to be wasted on an appeal.
3. Why CHOA employees never return phone calls. (Hey Wanda in medical records, it’s been over a month, but fortunately it turned out I don’t need that paperwork after all, so I guess just don’t worry about it.)
4. Why Obamacare doesn’t attack the heart of the country’s issue, which is that hospitals are charging increasingly outrageous prices with no rhyme or reason, operating off of Chargemasters that aren’t standardized or remotely in line with the actual cost of care, and are allowing this medical crisis a major role in the country’s debt.
Et cetera….et cetera…et cetera…
And to top it off, seizure activity is definitely back. I suspected I was maybe seeing very occasional absence seizures, but then yesterday we saw this. So thank you, hospitals and insurance. All the families dealing with health issues can count on you, that no matter how strong they are, how positively they approach their problems, you will always be there to try to break us.
And I guess now, 2.5 hours after getting up, after writing this blog in a mere fraction of the time I spent on the phone this morning, I will finally have my breakfast.
The weirdest thing happened when I called Boston Children’s Hospital to schedule Connor’s MRI for August when we will be up there for the TSC study again. An actual person answered the phone, and he immediately scheduled the test.
It was surreal. I dialed. Someone answered. Things were accomplished.
Meanwhile, I’m still waiting for Children’s Healthcare of Atlanta at Scottish Rite to return a message I left with the medical records department 2.5 weeks ago. So my list of CHOA departments that don’t return phone calls is now:
1. Scottish Rite EEG (note: call was returned after I recruited neuro office to get involved)
2. Emory-CHOA billing (note: call was returned over a month later once I wrote a letter of complaint and sent a copy to every single board member including the CEO)
3. Scottish Rite Medical Records (note: pending)
The reason I was calling them is that I recently submitted my application for Katie Beckett Medicaid, which, if approved, will help pick up costs of Connor’s medical care not covered by insurance. I’ve submitted 8 metric tons of paperwork, only (I hope) minus his surgery discharge papers. Those must have been accidentally thrown away. I don’t know if the board is going to want proof from the hospital (even though the neurology notes make plenty of reference to it, but it’s government after all) so as a precaution, I sent in a medical records request. None of the check off boxes described what I needed so I tried to explain what I was looking for. They don’t provide the records until they figure out what printing it will cost and then they send you a bill. Apparently the department thinks I need the whole 200 something pages and they want to charge me over $100 for it. So I called to clarify that all I need is a couple pages pertaining to the surgery and I’m not paying $100 for it. The discharge papers were like six pages for God’s sakes. That was 2.5 weeks ago. I hate CHOA and their unprofessional business ethic.
A couple companies that deserve a positive shout out so that I can offer contrast: Level 4 prosthetics. Connor recently got a cranial remolding helmet (a more detailed blog to come on that). At his initial screening, it appeared to be covered and we paid the uncovered 20 percent portion. Fast forward a few weeks and I arrive home today from one of Connor’s helmet follow-up appointments to find a denial from United Healthcare. Say what now? You want us to pay for this $3,000 helmet? So I freak and contact all his doctors and physical therapist to get proof of necessity, and then I call Level 4, who I should have called first. They’re already on the appeal for me. Good stuff. Thank you! And United Healthcare, my child is adorable in his helmet, but I assure you it’s not just a fun accessory.
The other company is AquaTots of Kennesaw. I became nervous that I would soon be doing time for homicide due to parents who think they get to save the limited dressing rooms for their swimmers, so I expressed my dissatisfaction. They were very quick to respond and remedy the situation. And now the mom who thinks it’s okay to let her children leave their cars in front of entrances where other customers can fall and hurt themselves walks the earth safely again (until she once again almost simultaneously paralyzes me and makes me change my kid on the floor, then all bets are off).
So these are my days. Doing Connor stuff, trying to get into some freelance writing and watching Roseanne reruns. I feel like I should miss working more, but I don’t. Probably because by the time I left, my teaching to do list had changed so drastically.
Sample To Do List 2005
1. Lesson plans for next week
2. Copy 2nd grade newsletter
3. pull center materials
4. choose new read aloud novel
5. try not to turn beet red, break out in hives and pass out from anxiety when undergoing mandatory teaching observations
Sample To Do List 2012
1. Some random excel sheet with random meaningless data to be submitted to someone who will never even read it, assigned 5 minutes ago, due now
2. see #1
3. see #2
4. Collect elevendy bajillion weeks worth of data so a student can receive services, but probably not
5. Attend a committee meeting
6. see #5
7. see #6
8. see #7
9. figure out what you’re teaching tomorrow. Somebody wants another excel sheet with data due in 5 minutes
10. try not to turn beet red, break out in hives and pass out from anxiety because it’s a work day
And all for less pay every year. Hey, I get it. There’s no money to be had. Just be ready to see more of this stuff on school property if you don’t want to pay people in the education profession:
I won’t say where I took this recent photo. I might need them to hire me one day.
What I do miss is how hilarious some of those kids can be. I received texts from a former co-worker the other day. She teaches students now that I taught a couple years ago in first grade. They told her that my “shoes haunted them.” My heels were like two feet tall, and they always watched out for me because they were afraid I would topple over. If I’d known I would have based my compare/contrast lessons on heels vs. wedges.
I also decided to start pursuing my original plan to make some of Connor’s food myself. I have the little baby blender/steamer combo, but I’ve only used it for pretty basic stuff. I decided to finally make one of the recipes from the little booklet that came with it. Hey, why not? Connor eats EVERYTHING. I mean EVERYTHING. This was the result:
I used to be disgusted by moms drinking and eating after their kids, but the other day I found myself fighting the urge not to eat half his spaghetti and meat sauce. Then I let him drink out of my water bottle. But I also realized he has 50 percent of my DNA. That means it’s half my saliva. So that’s okay, right? Is that what these moms have known all along that I didn’t understand? Or should I just go out and buy some mom jeans now?
Despite the failure of my foray into baby chefery, I am still happy because winter is finally rolling out and warm days have come. I leave you with photos of my little Gordon Ramsay in a good mood enjoying the weather.
Please click the Top Mommy Blogs link to the right! It really does make a difference!
A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!
Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.
He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.
I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).
Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.
So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.
And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.
Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.
Having your own Accredo issues? Please read my followup on Accredo here.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.