I’ve been on disability (SSDI specifically) for my migraines since the end of 2018, backdated at the time to mid 2017. However, it wasn’t until the start of this year that I now qualify and am approved for some assistance covering medical expenses. And lord let me tell you, getting here was a mess so beyond writing a guide on how this coverage helps me, I’m going to point out all the mistakes I made along the way and all the questions I had which went unanswered in hopes it can help make the next person’s process a bit smoother.

The timing between being approved for Social Security coincided with an adjustment to my parents Tricare for Life policy which allowed me to remain on their insurance as a disabled adult child. Because of these particulars, I don’t much remember the medical side of things as I simply was covered and my coverage continued as it had for my whole life. At some point, my Medicare Part A and B coverage began.

They do send you some really useful pamphlets when you’re approved for SSDI, including the Extra Help packet, which I admittedly paid little mind to since my Tricare handled all my drug coverage.

That is, until last summer when I decided to relinquish my dependency upon my parents and move out on my own. (I wrote about the trials that were switching off my parent’s Tricare for Life here and some of the earlier challenges I faced).

In short, in putting a sum of money towards an old century home, my personal assets would drop below the designated threshold making me eligible for Extra Help.

What is Extra Help?

Extra Help is available to people on Medicare who meet certain income and asset limitations. It provides extra assistance towards Medicare Part D (drug coverage) for monthly premiums, copays, and deductibles. For many, you can pay as little as $0 for your prescriptions.

The details of the program requirements can be found here.

Applying for Extra Help

There’s a two step process when you become eligible for Extra Help – for some individuals this happens when you apply for SSDI or SSI and you may automatically be enrolled – but for those who weren’t eligible from the start will need to go through some additional steps. The first step is to complete the Extra Help application online – which I’ve linked here. The second step is applying for a separate Medicare Part D plan.

You’ll want to have information on all of your sources of income – if you’re like me and have a small business, a tax return will suffice with an estimation of your earnings for the year. You’ll also want all your bank statements as you’ll be declaring how much money you have.

Now, for me I was in the process of buying a home and completing urgent repairs. The asset limit was right around $17,000 and as I was spending money my assets continued to fall. When I applied, going off the asset limit they listed in the pamphlet my assets were a few hundred below.

What I missed however, was an undefined lower resource limit that was actually used for counting eligibility. I found this out when trying to understand why the numbers in my denial letter were different than on every single pamphlet and legal article and resource about Medicare the world wide web had to offer. The secret lay in one of those little “?” mark bubbles that are next to every single line item on every form ever. Social Security allows you to claim $1500 of your current resources towards burial expenses. BUT you have to declare this when they ask, and if you don’t and you click into that little bubble it shows the “actual” resource limit which was $15,720.

So, some lessons: had I claimed the burial amount on my first application it would have been smooth sailing and I probably never would have noticed the discrepancy in advertised resource limits. And the second lesson, do your due diligence as much as possible. I am certain these little line items that even the specialized Social Security and Medicare team members I spoke with knew about are intended to mess people up. The benefits process is not designed to be smooth sailing.

Signing up for a Medicare Part D Plan

Once you’ve applied, you’re going to need the drug coverage. And yeah, you’re going to have to pay for it until you’re approved.

You may already have a Medicare Part D plan – or like me you may be leaving another drug plan. You can be penalized if you did not enroll in an eligible plan (or were enrolled in something with creditable coverage – my Tricare was creditable coverage). However, there’s a note that if you receive Extra Help you will not be penalized.

So, I had to pick a plan. Since I already have a Medicare account I was able to input my medications and browse the various plans, picking the one that provided coverage for all my medications.

I faced two issues here. The first was that since I was signing up before the Open Enrollment period I had a very hard time seeing what costs would be for the following year, and with no clear idea as to when I’d be approved for the Extra Help I hated not knowing how much I could be responsible for.

The second issue which actually bit me in the butt, is that until you’re approved for Extra Help you can only see what the costs will be non-extra help. What this means is that when you’re approved for Extra Help you have to be enrolled in one of the plans that offers a $0 deductible…

Y’all know damn well I was not enrolled in the right plan.

So, how can you avoid my mistake?

Log out of your Medicare account! Head on over to “find health and drug plans” then into Medicare part d and start your search with your zip code, not your log in. This will then bring up a screen where you can select any assistance you receive – ie: Medicaid, extra help and so on. Then you’ll enter your drugs and you can view the plans available to you which includes costs for premiums and deductibles!

Once you’ve picked a plan, you’re going to have to get set up with your new insurance.

The most frustrating part of this process for me was having to provide documentation of creditable coverage. Since I had Tricare previously, there isn’t really a good “proof of coverage” and since I’d left my parents, my previous “insurance card” which is just my military ID, had been left with my father to turn in to the DOD. In order to cover as many bases as possible, I included a copy of that ID, and EOB for as much time as my old pharmacy would allow that had a line item for “Tricare paid” with each prescription, a letter indicating I was approved for Tricare for a very different time period than was being asked for, and a letter I wrote explaining what all these documents were. This then was snail mailed off and I never heard anything other than “please pay your premium” so I have to assume I was successful in demonstrating my burden of proof.

Until you’re approved for Extra Help, you are responsible for paying for your new Medicare Part D plan. My new plan was just under $100 and had mostly reasonable drug costs.

I was unable to get a clear answer, but was under the impression there may be some reimbursement for your costs going back to when you applied.

The clear answer is: yes you will be reimbursed for any eligible premiums you paid when you’re approved for Extra Help.

It took a really long time to get my Notice of Award, which actually did not cover any of this, so I only found out because 1) when I was denied a nice lady I spoke to who was a Medicare Social Security rep told me I would be reimbursed and 2) then I saw partial reimbursements on my Humana billing account.

Those partial reimbursements and then the subsequent “hey you have a $61 premium” tipped me off to the fact that I had not signed up for the right Medicare Part D plan. Learn from my mistake friends.

A Pre-Decisional Notice

I do not know if everyone receives this particular notice or if the folks who are Definitely Absolutely Eligible just get the Notice of Award, but I received a Pre-Decisional Notice that indicated I may not be eligible for extra help after all. This was funny to me because I had recently received a letter from Medicare suggesting I apply because they thought I was eligible and because this little letter in the mail came when I was staring down a $13,000 potential sewer replacement and I might not even have a dollar left to my name.

This notice has two breakdowns: income and resources.

The income portion was simple enough, breaking down my self employment (self reported) and social security (from their records) with their calculations of what they count and what they don’t. My income here was right where it should be, just below the income limit.

The resources is what made me lose my mind, they showed my reported bank account amount and then a totally different number for the eligible amount. (this was discussed above in the application part as to what was inevitably wrong)

I was $657 over the limit.

And I was having a fit of laughter because OMG NOT ANYMORE as I stared at my ever shrinking bank account.

I spent the next day on a long hold with SSA and finally connected to a nice young lady who had no idea where the lower number for the resource limit was coming from. She directed me to set up an appointment with my local office and sit down and figure it out – or just walk in. She recommended I bring updated copies of all my bank statements as well to show I was indeed below the limit.

Luckily living in a very rural area means a very empty Social Security office so I walked right in with my letter and my bank statements, they took copies and gave me a phone number to call regarding the issue since they don’t handle Medicare related questions. And told me a case worker would get back to me soon.

I was a bit dumbfounded, but I called the Medicare person from the parking lot, not really willing to leave until I understood what had just happened. This lady was a damn delight, but she scolded me for handing over my bank statements like that. I get it, but also, all my income is correctly reported there’s no “gotchas” that can come from my account. This lady also had no clue what the differing numbers were all about and recommended I go back home and redo the application, since it wasn’t worth waiting on the denial and the whole process would have to start all over anyway. (I am unsure how accurate this advice was.)

She also recommended that when I was done I give the state a call and start asking about help with Medicare Part B premiums – you know the ones they keep with your Social Security check every month. She said just call and ask you might be eligible.

She had me call her back with the resolution of all of this – which was a pretty prompt phone call when I got home explaining the line item about the burial expenses.

I submitted my new application.

Then I got a call from my case worker at Social Security who was able to with my extra bank statements and my adjustment to exclude the burial expenses quickly said oh great I submitted this and got an “application approved” notice, I guess that means you’re all good to go.

Within a few days I could see on my Medicare account that I was approved for 2025 for Full Extra Help with $0 premiums, $0 deductibles and a range of numbers for what my drugs would cost.

I could see my future plan with a future premium that was NOT zero dollars, but like I said it took until I actually received the bill to put two and two together and find out that I’d signed up for a Premier plan not the basic plan.

I also received the refunds for the eligible parts of my premium. So, I applied a few days into October, and was approved by mid December. My Medicare drug coverage kicked in in November, so my reimbursements were for November and December’s premiums.

Now That You’re Approved, Here’s How To Get On The Right Plan

So, I didn’t really know what to do with the information I could see on Medicare’s website regarding the not zero premiums and with Open Enrollment having come to a close, I couldn’t see future plans much either.

At the end of December, I received the email from my insurance that my bill was ready to view and that $61 was due on the first of the month. Frustrated by this and knowing I was approved for a $0 premium I called my insurance company desperately trying to explain what was up, eventually requesting to connect with a manager who might be a bit more familiar with my problem.

During the excessively long hold time, I found a line item that specified about the “$0 premium for plans that offer it” or something to that extent. And as I looked at my plan, suddenly the word “Premier” was staring at me and calling me a silly goose through the goddamn screen. I went through the “find a plan” option and lo and behold there was the “Basic” plan with the $0 premiums and deductibles.

By the time I connected with a manager, I felt pretty ridiculous and explained to her how I’d messed up. She was able to confirm I was on the Premier plan, but couldn’t do anything on her end to switch me to a different plan.

This I had to accomplish through Medicare’s website. Now again, open enrollment had ended so I wasn’t sure I would even be able to fix this but one of the “special circumstances” is a change in Extra Help or approval for it, so I was able to move forward and select the basic plan.

I then had to sit on my hands and wait.

On January 2nd, my balance on my insurance account was $0 and my payment canceled and I received a new brochure for my adjusted account type. I have no idea if it normally works this fast, but I lucked out not having to be on the line for January’s premium and now all of my insurance is exactly as it should be.

Applying for Help with Part B Premiums

There’s a little box somewhere during the Extra Help application that you want to ensure is properly selected to allow your information to be shared with the State.

I’m already in the Oklahoma system because disabled individuals are eligible for the minimum $23 in SNAP benefits, as they were in Wisconsin. The same system offers things like state based Medicaid, WIC, and other programs for those in need.

I had previously looked through these programs and deemed that I wasn’t eligible, but followed the instructions to apply anyway – which you can do over the phone.

Once I finally connected to a rep, this process was very easy and with my assets continuing to fall I was indeed eligible for assistance with Part B – but not quite eligible for Medicaid or Part A assistance. With all the charts online, my income suggests I am not eligible, but there’s a line item that says to call anyway because each state counts and doesn’t count various things so you may still be eligible.

I must assume that like other programs, costs I am responsible for such as my mortgage and utilities bring down the countable income.

I was quickly approved, so in addition to having the Extra Help for Medicare Part D, I now am not responsible for paying the Medicare Part B premium and receive my full check amount each month. I also received a reimbursement for the month of December, since they backdate to count the full month as eligible.

For me this was a hugely unexpected bonus, that had I not made a handful of mistakes – or had I read the “more info” sections of the application for Extra Help, I never would have connected to the Medicare lady who told me to apply. That’s $185 extra I’ll have every month that I was not expecting.

*deep breath*

All in all this was a pretty confusing process for me where I found myself very frustrated and unable to get answers to my questions.

I’m frustrated that so much of the things I went through could be easily replicated by anyone, and that not everyone is going to have the right interaction at the right time to end up being able to optimize the benefits they’re entitled to.

Alas, I think this is all straightened out so my next adventure will be understanding those health insurance costs that aren’t being picked up by anyone else… like paying 20% of each doctor’s visit and deductibles and oh my god surgery might cost what?

A.

oh p.s. if you want to read about my experience applying for disability for migraines you can read my post here