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My letter to Medicaid, appealing my child's Medicaid denial
- ineedasername 5y agoAnd excellent counterpoint to the idea the US doesn't need medical coverage reform since the poor get it for free (and usually with that trip, the idea that everyone else without coverage is making that choice) I don't mean to oversimplify and paint a straw man here: These are literally arguments I hear from some family and friends on the topic without much of any nuance to them.
- commandlinefan 5y ago... but "medicaid for all" is the proposed medical coverage reform.
- opnitro 5y agoie: there would be no "application process" as everyone would have it.
- commandlinefan 5y agoDo you really honestly believe that the paperwork burden would disappear if the government took over medical care? Can you think of anything else the government runs which is free of mindless bureaucracy?
- Spooky23 5y agoYes. When you turn 65, you receive Medicare benefits after a pretty painless application form, which is mostly to obtain coordination of benefits information for retiree private plans Aftwards, you have very little interaction with Medicare, other than if you are placed in a nursing home or rehab, at which point you may need to argue for more benefits as the rehab will try to maximize their revenue by kicking you out after 90 days.
- GlenTheMachine 5y agoEver looked at the paperwork burden of private insurance for a child with a rare medical condition? I have. My wife and I spent a year - literally twelve months - filling out reams of paperwork to get a rare medication covered. And eventually failed. There did not appear to be any end to the paperwork. It was itself clearly punitive, they designed it so you would likely fail so they wouldn't have to cover the condition.
- jefurii 5y agoThis is a false talking point. My mom was a marriage and family therapist until she retired, and the burden of dealing with private insurance paperwork - private insurance - was so onerous that she and other therapists she knew simply had to stop dealing with insurance. Medicare paperwork was simple compared to that.
- toast0 5y agoWould the paperwork disappear? No. But I'd bet it would be a lot less. My spouse visited a doctor in January 2020, and we recently got yet another Explination of Benefits about that visit, which is probably the 15th time they've sent one. I wish I was exagerating.
- cogman10 5y agoAs someone who deals with medicaid paperwork as well as private insurance paperwork. It's basically exactly the same from the insuree's POV. I give the hospital my child's medicaid number, they take it from there. Really pretty much that simple. No prior approval. No crazy paperwork. Just give 'em the number and you are off to the races. I'm sure it would be worse for elective surgeries, but that's not really what anyone is arguing for.
- kelnos 5y agoWe already know the answer to that via Medicare. It certainly has its issues, but it doesn't seem like retirees on Medicare are drowning in paperwork.
- ineedasername 5y agoI think people going bankrupt with medical debt or outright dying through lack of care would still prefer beauracracy and paperwork to nothing at all. Besides which, unless you have the best gold plated insurance plans or a mediocre plan and never need to go out-of-network, mindless beuracracy and tons of paperwork describes the status quo of private insurance. And annecdotally, my father on Medicare has far few issues of that sort than I do on my (above average) employer's plan.
- caycep 5y agoNo - Medicare for all is what is being proposed. There is a stark difference between Medicaid and Medicare. Medicare, for those who can enjoy it (65+ or meeting criteria for chronically disabled), is pretty good insurance. You have your pick of specialists or primary cares, it reimburses providers pretty well, and ironically, processes claims faster than private insurance. There are some glitches that should be fixed sure, but it is definitely viable as a healthcare plan. Medicaid in comparison, is bare bones - the political reasons I'll let other people comment more, but access to care is severely restricted, it doesn't pay providers enough to keep the lights on, and is not really capable of providing any semblance of the modern standard of care.
- Spooky23 5y agoMedicaid also varies by state. South Carolina for a long time did not provide any “optional” coverage, and would advise some people to move in with relatives in New York or Massachusetts to enroll there.
- ars 5y agoIn my state it's precisely the opposite - Medicare is horrible, they only pay 80% until you meet a deductible. Never mind the money - just the hassle of the paperwork of paying all those bills will make anyone crazy. In contrast Medicaid is awesome - zero copay or deductible, just show up and use your insurance card. There is also Medicare Advantage, which actually is quite good - and it's private insurance that the government pays for. So maybe we don't need either "for all" programs, but rather a universal subsidy for people to buy their own insurance. > it doesn't pay providers enough to keep the lights on That's true about both Medicaid and Medicare, which is why neither will ever be offered to all, not without a salary cut to Doctors.
- ineedasername 5y agoNot quite, but I'm not sure what your point is. People opposed to such reform often use the arguments I cited, and I specifically use the failure of medicaid in this article article to demonstrate the flaws of those arguments. Those arguments' flaws aren't corrected with the implementation of a bad system.
- kelnos 5y agoThat would be a specious argument, then. The failure of Medicaid in this article isn't a failure to get coverage for someone on Medicaid; it was a failure to even get accepted into the Medicaid program in the first place. If you have Medicare for All, you don't have to worry about getting into the program, because everyone already has it, no?
- cabalamat 5y agoLooking at the data from gapminder[1], the USA spends more (typically, several times more) per capita than any other country on healthcare, and receives worse outcomes (in terms of life expectancy) than all other rich countries. Example: USA $8360/person/year, 78.9 years; Singapore $1730/person/year, 82.8 years. People who don't have health insurance are often shafted, but even people who do have health insurance are too: https://slatestarcodex.com/2020/04/24/employer-provided-health-insurance-delenda-est/ https://slatestarcodex.com/2020/04/24/employer-provided-heal... Healthcare is probably the single most broken part of US society/economy. [1]: https://www.gapminder.org/tools/#$model$markers$bubble$encoding$x$data$concept=total_health_spending_per_person_us&space@=country&=time;;&scale$domain:null&zoomed:null&type:null;;&frame$value=2010;;;;;&chart-type=bubbles&url=v1 https://www.gapminder.org/tools/#$model$markers$bubble$encod...
- cogman10 5y agoFunnily, it's because of the massive amount of bureaucracy involved. I say funnily, because the US government is know for being light on bureaucracy. Yet, somehow the US healthcare system has given it a run for it's money. Every hospital has a significant amount of staff dedicated to billing and negotiating with insurance companies. Every insurance company has a fleet of employees who work on optimizing costs, denying coverage when possible, and negotiating bills with hospitals. And on top of that, a large part of the job of HR for employers is managing healthcare benefits and negotiating with healthcare providers. Layers upon layers of ultimately waste. A single payer system ends up saving cost because. A. There's no negotiating bills with the government. You either accept what they are paying or you don't get paid. B. Because the government deals with every hospital, they've got very good insight into what things ACTUALLY cost. That makes it hard for a medical provider to play fast and loose with the numbers. In otherwords, admin costs for Hospitals go completely away and the government admin costs end up being a fraction of what the rest of the insurance industry is doing (because a lot of what private insurance is doing is trying to make money off of premiums in the stock market). Government does not have that incentive in the slightest.
- 1cvmask 5y agoIt's always amusing when the administration targets other countries it wants to overthrow with sanctions and instigates riots there through the NGO/CIA complex. And then they call these states dysfunctional, states who happen to offer free healthcare to their citizens. On the other hand 7 year old children have to become entrepreneurs to cover their medical expenses in our non-dysfunctional society: https://www.cbs42.com/news/local/i-hope-i-make-it-7-year-old-alabama-girl-selling-lemonade-to-fund-her-own-brain-surgeries/ https://www.cbs42.com/news/local/i-hope-i-make-it-7-year-old...
- google234123 5y agoAre you talking about Cuba or Venezuela (what other counties are associated with CIA conspiracy theories, sanctioned by the US, and praised for their health care)? If so, those are both terrible dictatorships which their own populations are working hard to take down.
- GordonS 5y agoI don't want to take the discussion too OT, but I'm curious: out of all the possible countries that the OP could mean (and there are a lot), which would you think of Cuba and Venezuela specifically?
- diordiderot 5y agoBecause he's a right wing troll that dang has gotten onto before
- coolsunglasses 5y agoThere are not many countries with free-at-point-of-service healthcare. In most cases it's heavily subsidized but still costs money (Japan) or they have a heavily regulated private + public insurance regime (Germany). China's a good example of de jure vs. de facto differences between what is purportedly offered as opposed to what is actually accessible to Chinese citizens.
- basedgod 5y agocounterpoint. this woman decided to continue with her pregnancy, despite knowing many of the severe medical conditions her child had. why should the state be focused on spending millions of dollars for an infant that never had a shot at life? health insurance shouldn't mean we'll do whatever it takes to keep somebody alive no matter what
- beervirus 5y agoI so rarely see pro-death-panel comments, it’s almost refreshing in its disgusting honesty.
- mjevans 5y agoIt's not disgusting, it's pro-mercy. It'd be a different thing entirely if our medical tech wasn't still barely above primitive efforts like leeches. E.G. Star Trek level medical tech where there are gene therapies, cybernetic augments, and guided regeneration of body parts? In that world the baby might be viable and could have a life of reasonable quality.
- deleted 5y ago[deleted]
- ddryui 5y agoYou are a dick. That's all.
- tehjoker 5y agoI'd rather spend the money on healthcare for very sick children with little chance of survival than on the military.
- DamnYuppie 5y agoYour comment in no way addresses the OP's stance. It was known there would be issues if they continued with pregnancy, they did, and now they want others to pay for their decision.
- spamizbad 5y agoThis illustrates how cruel "means-tested" benefits can be. Sadly, they're more popular with voters than universal benefits.
- gruez 5y agoThis has less to do with how cruel means-tested benefits are, and more to do with how nearly everyone can get wiped out by $2.5M hospital bill.
- jessaustin 5y agoThis situation doesn't seem cruel to you?
- gruez 5y agoIt's cruel because nearly everyone can be hit with a $2.5M expense, not because it's means tested. It's the fact that it's random and impossible to prepare for that makes it cruel. I don't have any issues with means-testing insurance subsides, food stamps, or rent vouchers, because those are payments that are predicable and won't wipe people out.
- jessaustin 5y agoOK, you'd like to consider means testing separately from the situation described in TFA, which makes rhetorical sense because apparently the family's income disqualified them from assistance with ruinous medical costs. Clearly this is not an example of how great means testing is. To speak more generally about means testing, you seem to think that reasonable people oppose means testing because it affects the well-to-do. That isn't the case. The well-to-do have little problem filling out forms or hiring experts in form-filling. Reasonable people oppose means testing because those who can't complete the various clerical tasks entailed are precisely those who need the benefits. And of course the administration of means testing is complicated enough that its costs usually rival those of the benefit programs themselves. To give an example, some years ago my father helped my grandmother apply to EEOICP, because my grandfather had died with cancer and he had been involved with unsafe incidents while in the employ of the Atomic Energy Commission. We would have been challenged to do it ourselves, but my father located an agent who specialized in such applications. Previously my grandmother didn't know that the program existed, and certainly didn't know the first thing about applying to it. That means that many other AEC widows, who didn't have people around who could help, did not receive the benefits supposedly designated for them. USA has lots of means-tested benefits that serve small fractions of the populations they are marketed to serve. This is by design. The concept of means testing is a story told to make benefit programs less effective.
- belval 5y agoOff-topic but why do people in the US say "we are pregnant" and not "my wife/girlfriend is pregnant". By basically all definitions only a woman can be pregnant so I don't understand why and where this usage emerged? EDIT: I can see now that the question was either poor taste considering the topic of the article or sensitive by a lot of people. I had no idea that this was a controversial question and I am sorry.
- dmead 5y agoit's to show their relationship status as intending to raise the child together.
- dlp211 5y agoIt's not meant to be literal. We all understand basic biology. The reason some of us say "we are pregnant" is because it demonstrates that both people are invested in the pregnancy.
- belval 5y agoRight so it's essentially used as a synonym to "we are expecting".
- kelnos 5y agoI'm from the US, and this has always been weird to me too. My understanding is it's essentialy a solidarity/personal-investment thing, a pledge from the non-pregnant partner to support the pregnancy and take on as much of the burden as possible, despite being unable to also be physically pregnant. But to me it's always sounded trite, and a bit like virtue signalling. The only person you need to show your investment to is your partner, and you do that through your actions, not words.
- rhexs 5y agoOne thing I might have missed in the story -- the reason for attempting to go on Medicaid was due to not having private insurance and the ability to pay for stratospheric out-of-pocket costs, or was it because private insurance immediately rejected a 2.5 million dollar claim? Not saying it's right, but I'd presume for claims that large you'd probably have to get a lawyer/some form of professional advocate involved even with private insurance.
- lghh 5y agoI don't want to speak for the writer, but I would personally hope that my community (via medicaid) would do a better job taking care of my child than a for-profit private insurer.
- deleted 5y ago[deleted]
- kingsloi 5y agoEveryone told us to apply, regardless of income. We were told that my private insurance insurance only covers so much and will be capped at X (either $ or hours). Medicaid would supplement the rest. For instance, my private insurance offered something like 50 nights of care per year. Medicaid offered, I forget, but with Medicaid, unbeknownst to us, there were limitations that didn't apply when using my private insurance, such as only one parent could be in the house, the nurse would need to document exactly what the parent was doing during that time, etc.
- rhexs 5y agoThank you, I’ve never heard details of what happens with high claims like this. I wish you the best.
- GiorgioG 5y agoThe sad truth is people only realize how fucked the US healthcare system is when they or their loved ones get sick. I was the same way until my son got sick (type 1 diabetes.) From then on (~2013) we've spent $20,000+/year to cover health insurance premiums/deductibles/copays. It's truly bonkers.
- EvanAnderson 5y agoUS, OH here - Most people I know have employer-sponsored health insurance and have no idea what it actually costs. I was self-employed and paid for my own insurance for years (and paid roughly the same that my employer pays now). If people realized how much is getting paid for their health insurance that could be going to their income they might actually care. Except they won't. >sigh< (Yes, I'm aware that there'd still be cost for universal insurance coverage in the form of taxes-- that's not all lost income. Still, I bet we could do better than the current "system" with single-payer and a real, forthright effort to actually reign-in costs. Oh, and no for-profit insurers.)
- gruez 5y ago>Most people I know have employer-sponsored health insurance and have no idea what it actually costs. >Yes, I'm aware that there'd still be cost for universal insurance coverage in the form of taxes-- that's not all lost income Seems like the right way to approach this would be to promise to tax it on the employer side, replacing whatever premiums they had paid before? That way everyone's happy. The workers don't see any increased premiums, and companies pay equal or less taxes (assuming it actually works out cheaper, but that's another debate).
- GiorgioG 5y agoThe right way to approach this is to move to a single-payer healthcare system. The administrative overhead of all of these insurance companies is STAGGERING. I consulted for a franchisee of Blue Cross Blue Shield 15 years ago. They were a "non-profit" org...the CEO made 2.1m/year. That's in a rust-belt city with ~1m metro area population. edit: They had a 200 person IT department that could have easily been run with 100 competent folks. For illustration, they had 20 people working full time managing the source of truth of their healthcare plans (to feed their claims processing system.) The source of truth was Excel spreadsheets on a shared drive. You can't make this crap up.
- cogman10 5y agoOK, just need to put this out there for ANYONE in a similar situation. It seems relatively unknown, but in the US you can enroll a child with chronic illness into Medicaid through the "Katie Beckett" [1] program, regardless of household income. Unfortunately, that process is both annoying and semi long (takes a month or so). Part of the process involved applying for and getting denied medicaid coverage. All this is to say, if you have a child with a severe long term illness/disability, you can get them extremely generous healthcare even if you are pulling in a large salary. I've had to do this with my own child, so I know it's really rough. But please, take advantage and get your kiddo all the therapy/medical care they need. Edit: I should note that not every state has this. Many (23) do. It looks like Indiana is one of the states that does not have it :(. States are required to have passed TEFRA. [2] [1] https://dhcfp.nv.gov/Pgms/LTSS/LTSSKatieBeckett/ https://dhcfp.nv.gov/Pgms/LTSS/LTSSKatieBeckett/ [2] https://www.kidswaivers.org/full-list/ https://www.kidswaivers.org/full-list/
- kingsloi 5y agoThanks for this! Yes, take advantage of any available programs. We were told to even apply even if you don't meet the criteria. It's better to apply and get a "no" then to not apply at all. Our social worker was knowledgable on IL programs, but not much on any in IN, so we had to do a lot of digging ourselves, even though the hospital is near the IL-IN border. Only when my wife joined an FB group did we find out about the Katie Beckett program. We were in the process of applying the for the IN A&D Waiver, as it's not income-based (well kinda). Apparently being approved for the A&D Waiver makes it "easier" to get approved for Medicaid as it shows a disability, in addition to other benefits. I think we waited a month for the interview, during the interview I mentioned my child was a very sick newborn, but the interviewer still had to ask whether my child was anxious or depressed, lived a fulfilling life, etc. I think I broke down afterwards. We were still waiting for the response when she passed away, actually, I think we're still waiting for it? It wasn't a fun experience. I understand the need for the questions, but I wish there was the questions were catered to the age of the applicant.
- Abishek_Muthian 5y agoI'm glad there's a way for someone with Chronic illness to get Medicaid in U.S., Thanks for sharing. I wish you and your child the strength to manage the health issues. I suffer from chronic illness(bone related, had a successful spine surgery couple of years back), Now insurers in India are straight away denying me any health policy and not just any insurers they're top private insurers in tie-up with leading international insurance companies incl. U.S.(There's 100% FDI for insurance industry). My interactions with the insurers gives me PTSD[1], I understand the business risk for an insurance company in insuring a sick person, So I'm not asking for a charity or even empathy all I'm expecting is for them to take decisions using medical science and common sense. Say I have bone diseases, I have proven with medical tests(conducted by the insurer) that my heart and other body functions are normal. Now a blanket denial of policy prevents me from getting proper treatment for diseases I don't have; Since my bones aren't normal should I be not covered for COVID too? The story is not unique to me, I've heard much worse horror stories from the disabled community. What's worse is blanket denial of health insurance to disabled are against Govt. regulations and supreme court orders; Yet all my complaints went to deaf years. Now I'm left with one option, I'm planning to write to the U.S. Government and other governments about how their companies are acting against the disabled in India. [1] https://abishekmuthian.com/insurers-are-putting-the-lives-of-sick-and-disabled-at-risk-during-covid-19-pandemic/ https://abishekmuthian.com/insurers-are-putting-the-lives-of...
- caycep 5y agoOf note, ironic that the writer seems to think Indiana govt "cares" about his child. The likely author of a lot of Indiana Medicaid rules was likely Seema Verma. She most emphatically does not care.
- deleted 5y ago[deleted]
- kingsloi 5y agoI guess that's the point of my letter, be consistent, you either care or you don't. "every life matters", "think about the kids" or "what about the children" is only relevant when it's about healthy kids, I guess.
- caycep 5y agoYes - I guess I should have rephrased my comment (or read things the first time more carefully) - thanks for pointing out the inconsistencies so poignantly...
- arthurcolle 5y agothis is so sad. I am sorry for your loss and this tragic story reinforces my thinking that the American health insurance system is a Kafkaesque nightmare. I work in healthcare tech working on tools to explicitly lower readmission rates and frequently wonder if my work helps to make it easier for healthcare systems to KYA (well, KTA) and streamline "bulk-handling" patients as opposed to effectively providing care for each individual patient. But really it seems insurance companies are legit the devil and in this case, the opaque bureaucracy of the US Medicaid system
- quadrifoliate 5y agoThis letter tugs at my heartstrings enough that ideally I would to rant for several paragraphs about the broken US healthcare system and the terrible political parties that make it so, but since that's not what HN is for [1]... ...are there companies or organizations that are trying to solve this sort of situation from the point of view of “We learn all the obscure healthcare laws in each state so each individual patient doesn't have to?” I have heard of Better, and had previously heard of Remedy [2], which seems to have folded [3]. I wonder if the insurance behemoths are just so big that the capitalist response of a competing organization to serve from the patient's side simply doesn't scale up quickly enough. And yet, I hear horrifying stories like this often enough that it seems like it should. ---------------------------------------- [1] https://news.ycombinator.com/item?id=29233883 https://news.ycombinator.com/item?id=29233883 [2] https://getbetter.co/ https://getbetter.co/ [3] https://www.bizjournals.com/austin/news/2020/10/29/health-tech-startup-remedy-lays-off-82-employees.html https://www.bizjournals.com/austin/news/2020/10/29/health-te...
- kingsloi 5y agoI agree - it's as if it's kept difficult on purpose. I got fatigued reading about all the programs, only to realise I'm reading about old programs or about a program in different a state, etc. I wish there was a site I could visit, fill out some info, and get info on programs I may be eligible for. I've been considering hacking something together myself, but it's almost too much for one person to achieve. Another user posted this site: https://www.kidswaivers.org https://www.kidswaivers.org, it looks like a great resource I wish I found sooner
- kingsloi 5y agoI am Kingsley and the letter was in response for my daughter Sterling. Thanks for posting OP/ivanech. This comment was for a post that was deleted, just posting it here so it's not lost forever. We were late to get an appointment as it was early into the pandemic. I was barely able to be in the room for the ~18 week scan, I wasn't allowed in the 20 week scan (at 21 weeks) so my wife FaceTimed me. No one mentioned anything was wrong at that scan, just that we need better tests at UIC. My wife had more tests there, I had to wait in the car as I wasn't allowed to go with her for those tests, during that test a Dr told my wife my baby had a heart defect, but it wasn't until the following appointment that we were told our baby had Hypoplastic Left Heart syndrome. We passed the date for a termination in IN, and were fast approaching it in IL. I think we had like 5-6 days until it was too late in IL, too. We were told it's a rough start, but do a Google search, look at Facebook groups, plenty of kids live "healthy", normal lives, after their surgeries. My mom & my wife's dad lived to be 40, I thought if I could give my child 20-40 years, it was better than 0. The oldest person with HLHS is in their 30s (as long as the surgeries have been around). We thought Sterling would be the same. An amniocentesis ruled out the trisomies, and a few other common abnormalities. My wife and I agreed that a positive result on a genetic condition would likely sway our decision for a termination. Some babies are born without their heart disease being discovered until after the baby is at home. Their brains are often starved of oxygen during that time, leading to other serious complications, so we were happy at least we found out and could prepare. It wasn't until after Sterling was born though did we discover there was more to her story. She received a new diagnosis every week, until she was 3 months old, only after genetic testing was carried out on us all did we discover Sterling had a very rare genetic condition called Kabuki syndrome. It was Kabuki syndrome + isomerism + HLHS that ultimately made it impossible for her to thrive & live a "normal" life. I've never experienced that kind of unconditional love before and until you're in that situation, you don't know how you would handle it either. We were going by the best info we had at the time. I agree, I likely caused my daughter to suffer immensely and I have to live with that guilt for the rest of my life. There were good, happy, fun days in-between the sad/bad days. I have lasting PTSD from watching my daughter code in front of me, then watch as chest compressions break her ribs, then to turn off life support. If I knew then, what I know know, things would be different. Ultimately, it's made me want to bring change. Parents should have all tools at their fingertips. If they're testing for the trisomies, why not test for all other known defects, too? Surely it's "cheaper" to do thorough genetic testing early, then it is for x surgeries, x days in the ICU, etc. Insurance doesn't cover it, and it's likely $10k+ out of pocket. That way, parents can make an informed decision. Same with Medicaid, if you're limiting when we can terminate, surely making life easier for us isn't too much to ask? I wasn't asking for a handout, just trying to avoid financial ruin, and do the best for my child, without killing myself in the process. 40% of parents of disabled children end up getting divorced. I found out some of those are likely due to earning too much to qualify for Medicaid as a married couple. The love, joy, appreciation, that my little girl was able to bring out of people is truly beautiful, especially during the pandemic. She's made people enjoy the little things, appreciate their lives, their families, their health, their kids health, hug and love their kids harder, etc. Sterling received 2.25 times the volume of blood in her body (1260ml vs 560ml). We've already put on a blood drive in her honour and hope to do an annual drive. 60 people donated total, 30 people donated for their first time, 33 litres/59 pints total, ultimately helping up to 177 people. We were interviewed by ABC7 2 weeks ago, and are going to be on a TV commercial for a Chicagoland blood drive in the new year. The pandemic has caused a blood shortage, hopefully my little girl's story resonates with people enough for them to give blood. We've created a non-profit solely aimed at helping sick children & their families. Hopefully my little girl's life isn't in vain, and we're able to bring some good to world because of her.