I find it ironic that before I became disabled, one of my last jobs was teaching social workers and doing outreach to the public about Medicare Savings Programs (MSPs) and now I rely on them. If the government hadn’t funded a grant for me to do this outreach, I might never have known this program exists. Problem is, most doctors, hospitals, politicians, and even the Medicaid offices that administer them don’t understand them at all which limits my access to care at times. Not to mention, most don’t know that their low-income Medicare patients could qualify for them.
The Medicare Savings Programs are a great resource for those who are poor and need medical assistance. The problem is, they shouldn’t be administered by the states through the state eligibility offices with Medicaid. This current set up confuses providers, creates huge burdens on patients, and adds stress to an already broken system with subpar tools and resources. But because it is administered along with Medicaid, as if it’s Medicaid, I’m subjected to this system, one that already already makes me feel like a burden, one that takes away my dignity as I try to simply get by. And unfortunately, it’s never going to get better.
The Basics of QMB et al:
If you qualify for Medicare, and you are poor, you may qualify to be on a Medicare Savings Program which can help with Medicare Part A and Part B premiums, deductibles, coinsurance, and co-pays. The level of coverage is determined by how poor you are. Based on income and resources (e.g. if you own a car or have stocks), someone might qualify for one of 4 programs:
- Qualified Medicare Beneficiary (QMB)
- Specified Low-Income Medicare Beneficiary (SLMB)
- Qualifying Individual (QI)
- Qualified Disabled and Working Individual (QDWI).
To see what the income and resource limits are and what each program covers, go here.
For my part, I qualify for QMB which means that I have less than $1,010 in income per month and less than $7,280 in resources (I assure you my resources are far less than that). This means that I have my Part A and Part B premiums paid as well any deductibles, coinsurance, and copayments.
This is amazing when it works. It means that I can get all the care I need – doctors visits, therapy, specialists, physical therapy, occupational therapy, hospital coverage. I have probably more access to care than most people in the United States in general – limited only by what Medicare doesn’t cover (things like dental care and IUDs) and providers who don’t take Medicare (unfortunately many don’t, but there’s still a big enough market of providers that do). And to be clear, I also need more access than most people in the U.S. simply to get by on a day to day basis and can barely afford my living situation and food, so it’s not like I’ve got some big windfall of a benefit but it ensures (along with my Medicare Part D Low Income Subsidy) that I can survive and maybe one day I’ll be able to work again.
However, through the infinite wisdom of the politicians (said with heaving sarcasm) who crafted MIPPA (Medicare Improvement for Patients and Providers Act which passed in 2008 over a presidential veto), it was decided (perhaps in part because this is a means-based program) that the state Medicaid offices should administer MSPs. This is where things become a problem for several reasons.
The Problem with Medicare QMB Administration:
First, since it goes through Medicaid, I get a Medicaid card which seems innocuous but is one of the biggest problems. When a provider sees the Medicaid card, they freak out. Many Medicare providers don’t take Medicaid and so they get upset because they assume I have Medicaid. I have had to put together a 5 page document with graphics to explain to them that no, this isn’t Medicaid, it’s Medicare. I know it’s confusing and then I go through the song and dance of explaining the program. Many remain weary. Some have said they won’t treat me.
Second, because it goes through Medicaid, it shows up at times on the form as me having Medicaid. Repeat same issue as above.
And Third, what I’ve been dealing with all week, I have to deal with the inane inefficiency of the state Medicaid offices. Issues from the application to the web portal to the phone lines abound. And not just in Colorado. I’ve now lived in 3 states (Texas, Maryland, and Colorado) where I’ve had to work with these systems and they are all convoluted and not in the least bit intuitive. As a lawyer, who work in the Texas State Legislature on the laws of these programs and who taught people about these programs, I find the process difficult. For most others, it can be near impossible to sort through.
The application itself in every state is a mess . The applications are supposed to make things somehow easier because they cover all of the assistance programs – TANF, food stamps, medicare, medicaid, etc. However, that just makes it more complicated. The questions on the forms create confusion and (partly because programs overlap on what information is needed – for instance, food stamps and QMB both require proof of income) it is unclear what information is really needed in the first place. Long checklists are provided by each state of what to send in. Yet, I kid you not, no matter how much I send in (this last time 31 pages) I am almost always told something is missing, they want at least 1 more document. It never ceases to amaze me how difficult it is to amass all the documents they want in the first place and then get them to the office only to be told they want something else.
In Colorado, the web portal is decent at letting you upload some of these documents but it has limits too. File sizes can only be so big, names of files can only be so long, the drop down boxes where you tell them what document you sent may not fit what you are sending, etc. If you aren’t computer savvy, forget using the portal.
The Colorado portal is also supposed to list your benefits but the tabs on the site don’t necessarily take you where you want to go. For instance “Account Management” takes you to a page where you can ask to “Stop MyBenefit Account Activity” – it has nothing to do with actually managing your account. The communication tab is completely frustrating in its own right with a subtab for “your questions” where, when you submit questions – they are almost never answered, or if they are the answer makes little sense. You get no notification that anyone ever looked at your question or when they answer it and at times, there’s no other way to contact anyone else. Being able to access it from your phone is a non-starter.
I could go on with the examples, suffice it to say, they did not develop these portals with the end user in mind and they certainly didn’t ask any beneficiaries to help them develop it. Sure it’s a place ripe for innovation and developing a decent portal could improve efficiency (thus saving the state time and money) but because it’s a benefits portal, the likelihood of it getting any focus is nil. (Plus most people think if you’re poor you don’t have access to or can’t use a computer to begin with).
The communications are also convoluted. For instance, I got a notice saying I was approved for medical assistance benefits. Then I was asked to be available for a call, but it did not say for which program. After the call, I got a letter saying I was approved for food stamps until March 2019 as long as my income didn’t increase beyond a certain amount. Then I got a notice that my medical benefits were cancelled because of a document I didn’t send in (one they asked for illegally) though I had already received notices I was approved. It’s absurd that it is this hard.
And then we come to the phone. I prefer not to use the phone. First, I have issues with sleeping and so my hours are off and I can’t always get to the phone before end of day and even then my anxiety can get the better of me. Second, I don’t like the phone for anything in general, especially when there are alternative means (like a portal) that can be utilized. But every once in a while, I still have to use the phone. Monday was one of those times. Given that my medical benefits were cancelled and I was scrambling to figure out what had gone wrong, what had fallen through the cracks, I was frantic to get a hold of someone and get it sorted out ASAP. I called the eligibility office and one inbox said I might not hear back for 3 days, another said maybe 2 days. I called the state Medicaid line only to be on hold for TWO AND A HALF HOURS, when someone finally answered, she could only tell me what the document was that was missing (again, one they didn’t need and had no basis of fact to ask for). Three hours later, I had no answers, had to cancel all of my appointments (therapy, physical therapy, doctors), was thinking about how this will effect my prescription coverage, and was upset and frightened I’d have no medical care under a Medicare program that I rely on and, if you ask me, should never be run by the states in the first place.
I realized later that the issue this time was not merely a lack of communication but a fundamental difference in how the offices are run around the state. I was previously going through the Denver County eligibility office the prior 2 times. This time I was under the Douglas County eligibility office and apparently Douglas County doesn’t read the rules it cites. Trying to get access to Medicare benefits I qualify for via these state offices meant to deal with Medicaid that are themselves not functioning properly (they should be run by a unified state office, not county by county in my opinion), puts an undue burden of stress on any applicant.
So What Can Be Done?
Nothing really. The federal government isn’t going to reform this part of MIPPA when they’re focused on repealing the ACA and destroying healthcare access for millions of Americans in the first place. In fact, things may only get worse as they continue their assault on Medicaid, with MSPs being a likely casualty of war. Heck, I’m not sure many Republicans know this program exists, because if they did, they’d be foaming at the mouth to get rid of it too. The states aren’t going to spend more money improving these offices or developing better portals. Because a lot of the requirements for all of these programs are federal, states hands are often tied as to making anything easier in terms of what needs to be submitted. And no politician will likely care about anyone who is a QMB, SLMB, QI, or QWDI because we’re such a small portion of disenfranchised individuals with no money or power. Thus, we are easily ignored and forgotten.
Many people think there are individuals “scamming” the system. To them, I’d like to say – try scamming it yourself. I don’t know anyone who would willing go through this much work in the first place and I am fairly sure that it’s almost impossible to do so given all of the hoops you have to jump through.
Many people think individuals on these programs are just getting a free ride or we’re “lazy” and don’t deserve these benefits, that we should pull ourselves up by the bootstraps. To them, I’d like to say, there is absolutely no joy in having to need to be on these programs. A million times over I’d rather be able to work and pay my own way. I’d like to pay for my own food and my medical care and my rent and all my necessities because it is beyond embarrassing to need this assistance and the panic I go through thinking I could lose them and not knowing if I’ll survive if I do is overwhelming.
Most people don’t know how hard it is to navigate this system and you never will until you are a part of it.
And once you are a part of it you will realize that it is an abusive system, meant to degrade and take the dignity away from individuals who are simply trying to subsist, to barely survive. I can’t refuse the Medicaid the piece of paper they asked for even though it was illegal to ask for, because I have to submit to whatever they ask me to do. They say “jump,” I say “how high” because if I don’t, I lose everything. I have to comply and be good and live under the constant threat that I’ll lose what I have. And if something goes awry, it’s never the eligibility office’s fault, it’s always mine. I can’t say no, I can’t fight back, I can’t press for change. I have no one at my back to ask for change either. So I try to work within a system that strips me of my privacy, my agency, and my dignity.
On Dignity and Being a Burden:
That dignity is further eroded as I am told constantly by society that I am a burden – my diseases and my need for assistance both make me a burden. Health policy papers are published every day on the “the burden of disease” or “the burden of diabetes” or “the burden of mental health illness” or “the burden of multiple chronic conditions.” They outline in very detailed numbers how much I cost society. Some are meant to be encouraging as to why we should change the healthcare system but even that good intent still makes me a number, a number of how I take away from this society when I can give little back.
You would think that if someone wanted me not to be a burden, they would change the system and make sure I have access to all the care I could need. For if I were able to get better and become more functional, I could contribute to society instead of taking from it. But the real truth is, people don’t see it that way. They don’t see me as an investment, they see me as a dead weight. And they see my needing assistance as being a character flaw rather than an actual need – blaming me for the diseases I suffer from rather than helping me overcome them, yet another assault on my dignity and worth as a human being. If you see someone as dead weight or at fault for lot in life then you see no problem with taking away the very benefits they rely on.
Trying to explain that in the end it’s cheaper for society to make sure I’m treated versus not isn’t persuasive to most. Granted, I would certainly be much cheaper to society if I don’t get treatment and die. I’ve said this before:
“In all honesty, I do not joke that
the system is set up to make people quit
and, in the macabre sense, to make them die.”
This isn’t hyperbole, though I wish it were.
Update: I received a notice in the portal that says I qualify for medical benefits but under the notes it makes it incredibly unclear what I qualify for. Therefore, I remain unsure if I truly have the coverage I qualify for and am stuck in limbo trying to contact the office yet again to get clarification. Until then, all appointments are cancelled and I remain browbeaten by this system.