#and honestly financially and logistically it would make more sense to live in oregon right now

[pollen]

:(

[spoonie-living]

[Image: a person in plaid flannel and boots falling on the backdrop of a foggy sky. Credit: Pexels]

The Hard Fall: How getting on disability can impact your benefits (U.S.)

As spoonies, we’re generally occupied with getting on disability, but what happens once we win our case?

My lawyer didn’t prepare me at all for this, so when I got my confirmation letter and first payments, I had no idea what it would do to my government services.

When I called around, I got directed to some local government office. “Yeah honey,” the woman on the other line said sympathetically, “we call that the hard fall.”

And hard it was; I lost access to several doctors and had to pay out of pocket while sorting out my prescription coverage. And honestly, it could have been a lot worse.

This is something you want to know about before you win, because the last thing you need is to flail around trying to sort everything out as fast as possible. Trust me, I’ve been there. And I’d like it if you didn’t have to go there.

If you’re waiting on a case, take a few minutes to look through this information! It’ll help you set your expectations and save you some grief as you get settled after your case comes through.

I’ll be updated this as I come across more information (or potholes in the road), so click here to see the most up-to-date version of this post!

Disability backpay can push you out of resource-/asset-based programs

If you’ve been waiting a while on your case, your backpay could be pretty huge; after about two years, mine was $35k!

HEADS UP: If you’re blazing through your disability backpay to handle unpaid bills, be sure to leave yourself a decent cushion in case you have to pay for things out of pocket while everything gets sorted out.

If you’ve been benefiting from programs that determine eligibility based on how much cash you have in the bank (for example, food stamps), your backpay will probably knock you right out of them.

Take a moment to assess what government services you receive and prepare for their loss. In theory, the extra disability income will replace it, but… well, that’s only in theory.

NEED AN ESCAPE ROUTE? There’s an option called an ABLE Account that allows you to set cash aside for anything related to living with a disability (and that’s a broad category). This cash does not count towards your assets as evaluated by some (some) assistance programs.

You can only deposit $15k/year, though, so depending on the spare cash you end up with, you may spend a year off asset-based services. Note also that your disability (as recognized by the government) must have had an onset before 26 to quality.

Disability income can push you out of income based services… like Medicaid

I gave a thought to insurance only once I received the letter confirming my win. I had heard something about getting on Medicare, but not much else. I figured I’d have both at once. But… that wasn’t the case.

Turns out, disability income counts towards the income cutoffs associated with Medicaid. Yes, I now “make too much money” to qualify for Obamacare. Which didn’t exactly make sense. If I qualify for income assistance due to a disability, why wouldn’t I be a good Medicaid candidate? And why, oh why, would being declared disabled be a good time to mess with a person’s medical coverage?

What I learned is all comes down to the state/federal divide. Medicaid is state, and Medicare and disability are federal. The state doesn’t care where the money comes from; it’s just income to them. Meanwhile, Medicare is granted to everyone who gets on disability. Some folks with low enough disability income are “dual eligible” (which comes with its own weird logistics), but others, like me, end up just on Medicare.

This was really bad news for me, as Oregon Medicaid has really fantastic coverage. I got lucky with my providers overall, but still lost access to a couple important ones. You’ll want to look ahead as you wait on a determination and figure out whether you’ll be paying out of pocket or dealing with a gap in care as you start the insurance shuffle.

WARNING: While some states offer Medicaid coverage for naturopathic medicine (thanks, Oregon!), be aware that Medicare does not. You’ll need to pay out pocket or look for a Part C plan (see below) that does cover naturopaths. Which will be cheaper? Get out your calculator…

ETA: Medicare doesn’t cover routine dental or vision, either! It’s worth calling one of the orgs listed under Getting Help, below, to see if there are some subsidized options for you. Otherwise, check out this article for some ways to get that dental coverage. It looks like an Advantage Plan (Part C, see below) is the best option if you need vision coverage.

About Medicare coverage

The first thing to know about Medicare is that it has multiple, potentially moving, parts. Part A is hospital and emergency coverage, B is routine medical care, and D is prescriptions. What about C? Well, C is optional, bundled coverage that overwrites parts A, B, and D.

I don’t know all the factors involved in my case, but what I do know is that I received core Medicare for parts A and B, with Aetna for part D (prescriptions). However, there was a gap between that and the end of my Medicaid prescription coverage—so I was enrolled in the NET program, which is another prescription coverage to ensure you don’t get wrecked by transitions like this.

The most fun part? Nobody called me to get me “set up” and fill in the gaps. I was at the mercy of bureaucracy and the postal service to know what I was enrolled in. So for a little while I was just spinning my wheels and definitely paid for a prescription or two out of pocket.

NOW I KNOW: I probably could have created an account with Medicare.gov to get that info sooner. It’s worth trying, to see if you can save yourself the trouble.

Once I gave my insurance info to the pharmacy, they were able to initiate a partial refund for the difference. If they hadn’t, I would have needed to put in a claim by mail and waited for that to process.

BUT SERIOUSLY: Don’t wait on getting stuff in the mail. I got my “welcome to Medicare” brochure a full four months after actually getting on the damn thing. Luckily my actual card and prescription coverage info came much faster than that, but I just want to really illustrate what a mess this system is.

Paying for Medicare

Your Medicare coverage may not be free. With standard Medicare, you’re given specific monthly premiums, deductibles, copays, and more based on your income level.

SOMETHING NICE: In my case, there are no costs for my coverage this year; I think this is a kindness extended to ease the transition. I’m personally likely to save money this way, but another patient might potentially save by moving straight to a (paid) Part C plan.

Saving money and accessing doctors with Part C

My heart sank a bit when I first looked at what I had been given: Medicare isn’t really “one size fits all” in terms of price or coverage, and certainly wasn’t a good match for me.

Luckily, we have Part C to compensate for that. The government essentially contracts out to other insurance providers for Part C, so that folks can find a different mix of fees and coverage that better suits their medical needs.

So, you’re going to have some kind of coverage from day one. But once you get your wits about you, it’s definitely worth looking at your options in the Part C “marketplace.” In fact, Medicare.gov has a handy tool that’ll let you enter in your prescriptions, doctors, and more. Then the site will spit out the most advantageous plans for you.

Getting other/additional insurance

You might not be happy with any of your options under Medicare—and unfortunately, being on Medicare means you can’t buy coverage on the insurance marketplace.

That being said, there are some programs out there that’ll help you out.

A great example is Medicaid Buy-in Programs for disabled folks who work (even the tiniest bit, as long as you claim the income on your taxes). This does have resource limits, though, so don’t get too excited until you’ve figured out what kind of backpay you’re getting.

What else is out there? It really depends on your situation and your state. Your best bet is to contact your state’s DHS (mentioned below) and ask them to help you identify your options.

Getting help

As I’m sure you’ve gathered by now, Medicare is an old system that’s been rebuilt, patched, and painted over—and navigating it (especially in conjunction with other benefits) can be a bit of a nightmare.

Luckily, there are programs that can help! Getting connected with them should be one of the first things on your to do list after getting on disability. Here are the two major ones that I was encouraged to work with:

State Health Insurance Assistance Programs (SHIP) - This is a resource center and network of advisors meant to specifically help you navigate public insurance options. You can find your state’s program here. Oregon’s program, SHIBA, has a volunteer come visit you and explain how Medicare works—and honestly, this visit is what enabled me to make sense of all of this enough to write an article about it!

Your state’s Department of Human Services (DHS) - specifically, their senior and disability program - Once you register with them, they can help you access additional support programs, including insurance and food stamps. They may know about programs you aren’t aware of, so it’s worth filling out the form and getting a quick case review.

Other things to look out for when you get on disability

[Only one item for now. I’ll fill in more as the surprises hit.]

This year’s taxes are gonna be weird. Depending on your financial situation, you may want to get the paid version of TurboTax or get a tax consultant in on things. The short version, though, is that you can choose to modify previous years’ taxes to incorporate the backpay you received, or claim it all on your coming tax forms.

…and that’s what I learned from my hard fall. I truly hope it helps you avoid the stress I dealt with, or at least anticipate it more adequately.

Did you have a “hard fall”? Do you have advice to add to this? Do feel free to comment with your experience or contact me with any additions!

❤️, Editor Diane