Do you remember when I wrote about corona giving me financial stability for the first time? Well, let’s walk that back a bit.

A giant stack of paperwork just showed up after my recent Medicaid renewal and after several back and forths it turns out the government gives with one hand, and takes with the other. Due to the unemployment being counted as income for the purpose of Medicaid, my spend down (aka deductible) is now over $7,000.

I have Medicare as my primary, so I have 80/20 coverage with them, but Medicaid won’t kick in until I pay $7k out of pocket because of the unemployment income I received. I am fortunate in that I saved as much as possible of that unemployment money.

If I become ill and incur large bills, I will have that $7k to pay the deductible, but that will be the vast majority of my savings in my ABLE account. What remains after that is to pay my 2020 taxes on the unemployment I received.

Essentially: I cannot get sick until unemployment ends/covid ends or I lose nearly all my savings.

It just adds a lot of uncertainty to an already uncertain world. I thought I had some security and stability for the first time in my life – ha. Nope.

Wish me well friends, like, super duper hard. No surgeries or hospitalizations until all this is over, so when we come out the other side, I have some security and savings in my ABLE disability account. It is purely luck at this point.

The fact that I’ve saved all this unemployment and it cost me health care coverage…is really just mind blowing to me. We need universal health care.

I’m incredibly grateful for what I have, and that I’ve made it through this pandemic with the gift of unemployment, but this just again demonstrates that poverty is forced on disabled people in order to keep health coverage.

I’m locking down even harder than I have been. I’ve only talked to friends or family from 10 ft away outdoors, masked – the only way I’ve seen people since March – and only twice a month at that rate. Now, I’ll drop items in my parent’s or best friend’s driveway, but I’m not interacting anymore. This is having a serious impact on my mental health. This level of isolation for this extended period of time – not being touched for 9 months – is causing great mental harm at this point.

I have such banked fires of rage inside of me towards people, and why this is going on for so long and the harm they are causing with their lackadaisical attitudes. I’m disabled, chronically ill, and in forced isolation due to high risk. My physical life and health are on the line, and now, so is my financial future.

With unemployment ending on 12/26 the only income I will have is my SSDI of $972 a month – which has been garnished because the unemployment knocked me out of the Medicare savings program. They are taking 2 months of Medicare premiums from me leaving me with $691 for January. I’ll have to start pulling from the Able account to live in 2021, and if/when I become ill – there may not be funds left for that $7k deductible/spend down. The point of an ABLE account is to protect some assets for disabled people from the Medicaid asset test. If I am forced to use the ABLE funds to pay the Medicaid deductible/spend down – are the assets actually protected? I can apply to reinstate the programs in February, but there is a 2-3 month lag in reinstatement and communication from the state to federal level.

Guys, why do I even have to know this? Do you know that I printed and submitted 100 pages of documentation to Medicaid? It’s a full time job just to keep all this paperwork going, to understand the way the state and federal programs work and interact. Then I’m supposed to live my life on top of that – in a way that makes abled people happy. I’m ultimately responsible for everything right? So I better be eating perfectly healthy, exercising, taking meds and supplements – you know – all those things that would make me less ill – on my poverty level income – while handling all of the above, AND ALL THE REST OF LIFE, or the world will blame me for my ills.

And guys: I’m massively privileged in the disability community. There are many people who do not have access to a computer or if they do, an accessible option. A Brail Note – a computer for the blind with brail controls – starts at $4,195. I can go buy a Chrome book for $100 and have internet access. I have a printer, ink, and a car that works, and money to put gas in that car. AND THE ABILITY TO DRIVE. With all this privilege – including being a cis white woman – it’s a huge draining battle all the time to keep up with just ensuring I have access to necessary medical care.

I did not do anything wrong. I became disabled at 24 years old, and what I believed to be true has held true for the last 14 years – a future of lifelong poverty. The only way that will change is with a universal health care program. I ask you: fight for yourself. Fight for your family. Fight for me. Fight for those people you call idiots and you don’t feel deserve anything – you are that idiot to someone. We all deserve to live a life without fear of illness bankrupting us.