My letter to Medicaid, appealing my child's Medicaid denial
kingsley.sh
kingsley.sh
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]
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.
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...
Denial of policy renewal - if thats what you are saying is happening - is indeed illegal. Instead of wasting time, you should file a writ petition in your jurisdictional High Court, and make sure your lawyer does not let the matter go on for "date after date". If you can't afford a lawyer, this is something you can try to file on your own - High courts tend to take dim views of such behaviour by companies, and don't stand too much on ceremony. There are people called "law clerks" that operate on the High court campuses. They are the ones who do all the paper work for all lawyers (excluding actually drafting) - and they tend to be underpaid. Find one of them who is willing to help you unofficially for a small fee - this will help you take care of the basics (you need this form, so much fee stamps, this signature here, etc etc - this is needed to just get the matter before a judge). Once it goes in front of a judge, plead your case in normal speech, respectfully, without theatrics, and state the remedy you are seeking.
There have been plenty of precedence which lead to supreme court passing an order urging the Govt. to ensure disabled get health insurance. And govt. made changes to Insurance regulations which states that the insurer should cover pre-existing diseases after maximum of 4 years and blacklisted certain chronic diseases(Mine isn't blacklisted) from being covered; Note: Just the diseases are not covered, Policy is not denied.
So all these insurance companies are advertising 2-4 years to cover existing diseases as per the regulation. I went through lot of effort to apply to all leading insurers and have documented(link in prev. comment) how they ignore the insurance regulation to deny policy, Followed by how my complaints to the insurance regulators on each of these insurers did absolutely nothing.
Journalists from leading media org. approached me to hear the story after I published the blog but they didn't publish any story on how the insurance industry is treating the disabled as they're the leading advertisers especially during COVID. Few independent media did publish my story along with those of others facing similar situation.
I'm of opinion that getting these insurers reprimanded in their home countries for their unethical, immoral and illegal behavior might have great positive effect for the disabled around the world.
...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.
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[1] https://news.ycombinator.com/item?id=29233883
[3] https://www.bizjournals.com/austin/news/2020/10/29/health-te...
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, it looks like a great resource I wish I found sooner
(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.)
>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).
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.
IDK why this couldn't simply be a part of regular income tax and perhaps a bump in the capital gains taxes.
When you think about it, it's a bit silly that employees earning 2 or 3x the salaries of other employees are paying the same for healthcare.
This would also have to happen because not all employers offer healthcare (small businesses or contracting), yet everyone would still (presumably) get healthcare.
In any event, I'd honestly happily pay a bit more in taxes for the more progressive healthcare plans. No deductible and vision/dental? Impossible to break the bank for cancer? No coverage gaps between employment? I could start my own business and not worry about health coverage?
Universal healthcare is a terrific idea that most other nations have. It's not bank breaking and there's no country I know of that's decided to ditch it after implementing it.
psychological reasons, because you're already accustomed to it. You'll be shocked/outraged if the government randomly fined you $25k, but when the IRS wants $25k of your income you begrudgingly put up with it.
You think it costs more to treat someone who makes more money?
And, if you are talking about treating people based on what it costs, then why have insurance in the first place? The entire point of insurance is sharing the cost with others.
It's not about sharing the "cost", it's sharing the risk. Insurance is all about risk profiling and compensating for that. The cost to treat you is dependent upon your medical profile not how much $$$ you are making. If you are less risky *and* make a lot of money you won't get a higher premium than someone much more riskier and who doesn't make a lot of money.
> No, I think everyone needs healthcare regardless of income and expenses. However, I think someone making 200,000 is much more capable of paying $1200 monthly than someone earning $30,000 is capable of paying $600 monthly.
Okay, but then what? Cross-subsidization is a inherently unfair practice.
The "risk" is a high cost event.
For insurance to work, there has to be winners and losers. The price the losers pay isn't exactly fair to them, is it?
> If you are less risky and make a lot of money you won't get a higher premium than someone much more riskier and who doesn't make a lot of money.
Not how it works in the US (particularly with Obamacare regulations) the only risk profiles insurance companies are allowed to consider for health is age and smoking. Prior to Obamacare there were preconditions they could evaluate to offer different insurance premiums. Those are all out the door.
> Okay, but then what? Cross-subsidization is a inherently unfair practice.
And? I don't understand why it matters to be absolutely "fair" to the wealthy. The wealthy achieved their wealth by means of a great society powering their empires. Why is it a wrong to expect them to pay more to improve the society around them?
And, importantly, the US wouldn't be the first nation to do this. Progressive taxation exists in pretty much ever successful country. And, besides the US, all of those countries will have some form of Universal healthcare funded by that taxation.
Right, but there's a difference between you paying your expected value in costs (imperfect as it might be, because of the attributes insurance companies are allowed to consider), compared to you paying 3x the expected value on the basis of your income.
A huge portion of someone's income making $30,000 is going to housing and food. Things that cost the same regardless of income.
For someone making 100,000, 200,000, etc, they have a much higher amount of disposable income.
Even if we are talking about fixing other aspects of healthcare, when it comes down to it, those with more assets can afford to pay more without impacting their lifestyle.
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
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.
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.
I wish you the best.
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.
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.
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.
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.
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.
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.
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.
Those arguments' flaws aren't corrected with the implementation of a bad system.
If you have Medicare for All, you don't have to worry about getting into the program, because everyone already has it, no?
Example: USA $8360/person/year, 78.9 years; Singapore $1730/person/year, 82.8 years.
People who don't have health insurance are often shafted, but even people who do have health insurance are too: https://slatestarcodex.com/2020/04/24/employer-provided-heal...
Healthcare is probably the single most broken part of US society/economy.
[1]: https://www.gapminder.org/tools/#$model$markers$bubble$encod...
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.
"every life matters", "think about the kids" or "what about the children" is only relevant when it's about healthy kids, I guess.
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.
Even for a healthy child, you need to go through the humiliating experience of weighing your child at a social services office to prove that you are feeding it, for example. Failure to appear can impact your benefits.
I was glad I had paperwork that outlined my daughter's diagnosis, but it didn't matter.
During the Medicaid application, it asked for a signature to collect medical records on my behalf from the hospital. I signed both, and returned them in our application.
Of four, one of the reasons we were denied Medicaid is because they claim I never signed the paper (or returned, I forget), which was incorrect (I have proof), so they weren't able to collect Medical records. During my hearing, the State weren't able to provide any proof that I didn't sign/return, so it was unfounded, but it didn't change anything, nor did I get an apology.
Because the federal system has a strong bias towards states as opposed to people, you need to change the minds of people in the resource extraction states.
Is there? One obvious question would be how such polls are worded. I'm sure you can get 60% of americans to agree on "universal healthcare", but only 25% agree with universal healthcare proposal A, and 35% agree with universal healthcare proposal B. In the end there isn't enough support for a specific proposal, because it means different things to different people. We saw that with brexit, where the majority voted "leave", but they all had different ideas of what "leave" meant, and none of the concrete proposals had anywhere near 50% approval rating.
IDK why this happened, though. WTF "loves" their insurance provider?
Why Biden got the nod is somewhat beyond me. My best guess is that most of the democrats in the primaries figured he was less scary than a socialist for middle of the road voters.
I think this boils down to propaganda. Americans have been taught that the "competitive" private insurance system gives them "choice", even though in reality they have maybe one or three plans from their employer that they can choose from, assuming they are working for an employer that gives them health benefits.
The ACA marketplace does seem to give people choice, though decent, low-deductible plans are pretty expensive and are likely out of reach for most people who get their insurance that way.
The other rationalization -- which I am somewhat sympathetic toward -- is that people don't trust the government to do a good job providing health coverage. They believe it will be riddled with red tape and inefficiencies and bureaucracy, and will cost much more than the private insurance system. And that's even before we get to the "death panels" FUD and other invented nonsense.
This is really something that I wish more Americans could just experience.
I've had the fortune (mis?) to experience England's NHS system.
England isn't particularly known for running a bureaucracy free government :D. Yet, the NHS feels like a dream compared to the US healthcare system. I pretty much just filled out a card saying where I lived and that was it. Really bizarre for a non-UK or EU citizen.
After that, no bill, no nothing. IDK if I even needed to fill out the card TBH. Doctors appointments were just like you'd do with a regular doctor in the US. Simply schedule and show up.
A friend needed surgery while there and again, pretty much the same thing, showed up to the emergency room and got seen almost immediately.
All in all, wasn't really any worse than what I'd get in any US hospital.
We see so much paperwork in the US because there are (at least) 3 parties involved in every medical bill. You, your insurance, and the hospital.
Single payer cuts your involvement to 0 which kills pretty much all your paperwork. It also vastly simplifies hospital billing.
It's the technical equivalent to supporting 100s of standards and then dropping down to a single standard. Even if that standard is garbage, eliminates the need to support the 99 standards (even if some are better).
Costwise, it can't help but be less. The fact is, there's a lot of duplicate jobs in each insurance agency as well as some jobs that simply won't exist (no need for accuracy tables, for example).
There were multiple ways to qualify for Medicaid and some of them are purely based on poverty with no disability or medical issues. Those cases needed the carefully documented income, bank accounts, retirement funds, etc. It's a bad system in many ways in and of itself, but at a high level they do need some way to confirm that Elon Musk isn't applying for Medicaid just for shits and giggles.
The other qualifiers for Medicaid are medical issues that are detached from income.
The frustration of it all is that there is a single form and while you'd hope there'd be a 'skip this section if you do not qualify based on income' there isn't, and you can end up trying to pull together every financial document you have.
( It can be worth a try to attach a W-2 so they have something and stopping there. They can contact you if they need more )
A better system would provide healthcare to everyone and just tax Musk more to pay for it.
I mean, who cares if he is if it means people like this are able to get the care that they need? That would be such a small drop in the bucket compared to all the people who genuinely have been screwed by the system.
If Elon Musk uses $2.5 million in healthcare but pays 200x or more than that in taxes I don't see that as a problem.
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.