I’d like to explain why I’m on Disability, and how difficult it is to work oneself off of it when suffering a chronic illness. I’m going to tell you my story, but keep in mind that my circumstances are VERY similar to a whole lot of people on Social Security, most of whom are veterans and/or the elderly.

I’ve been on Disability for about five years. I’m living below the poverty line, but it’s the most stable I’ve been in my entire life. Since I’ve gotten Medicare I’ve gotten more medical answers than I’d gotten my 30 plus years preceding. Time and time again I’d tried to keep a miserable job for the health coverage, until I couldn’t anymore. I wasted my 20’s trying to find and maintain health insurance, instead of chasing any aspirations. I kept telling myself I could travel and live my life how I wanted once I knew what was wrong with me and got myself fixed. It was only once I was on Disability and had the benefit of Medicare that I finally got a real diagnosis. I’ve got a relatively rare genetic condition, Ehlers Danlos Syndrome (EDS). (In addition to EDS effecting the way my body produces collagen everywhere making me prone to organ rupture, it’s wrecked my spinal stability causing widespread neuropathy and irreversible never damage. I also picked up Lyme Disease six years ago, and ever since have had chronic debilitating migraines for which I’m still taking antibiotics and receiving botox injections. I’m like a perfect storm of genetic eccentricities and bad luck.) My health will only get more complicated and need more specialized doctors as I age, so I’m too afraid to let go of Medicare (since it’s one of the few insurances most of these rare-disorder-specialists take, without which I’d still be undiagnosed). I’m simply not capable of keeping the kind of job that would provide me the kind of health plan I need. My health is too unreliable.

I’m trying to find a way out of this medically induced poverty. I’d like to figure out how to escape, and how much money I’d need at my disposal to be able to see doctors the way I currently do, without depending on benefits.

Here’s the stats:

INCOME:
$702 – Social Security Disability (SSD)(federal)
$169 – Supplemental Security Income (SSI)(state)

ASSISTANCE:
$200 – Food Stamp Card (EBT)

HEALTH:
80% – Medicare (Federal)
20% – Medicaid (State)
meds are mostly all paid through Medicaid (over $1,000 a month) with affordable co-pays of no more than $3 each.

HOME:
$600 – Rent
$60 – Electricity & gas (on average)
$35 – phone (Cricket)

For every dollar of income I get elsewhere (either as a gift or earned), SSI gives me 50 cents less. So if someone gave me $100, I’d have $50 deducted from my SSI. In NJ, if I have an income over $1,367 I will no longer be eligible for Medicaid, which means I’d have to pay out-of-pocket for my medications (which cost me over $1,000 a month) as well as 20% of my overall medical costs.

Also, if I make more than $810 through active employment in a month’s time, and do so nine times in roughly ten years, I will no longer receive SSD payments. I would be allowed to remain on Medicare for seven years of a “trial work period”, after which time I’d have to buy my own health coverage. If I bought Medicare out of pocket, it would cost me, last I checked, around $600 a month.

The one factor I don’t have the numbers for is how much my doctor visits cost monthly or annually, but it’s probably a few hundred a month (I see specialists at Weil Cornell/Columbia and the Hospital for Special Surgery). I will likely need spine fusion surgery in the future, which costs an average of $91,066 (and that’s an estimate without involving the Cervical spine or any complications, of which I am bound to have, given the Ehlers Danlos and possible Chiari Malformation). I’m supposed to be getting new MRIs of my spine to bring to a spinal surgeon to ask about fusion, as recommended to me by my pain clinic, but I’ve got an out-of-state insurance problem.

The New York metro area is really hitting hard on the non-wealthy. I’d been living in NYC for most of the past 18 years, primarily because of the public transportation system, and feeling like I actually fit in somewhere. I had to leave New York City and move back to New Jersey because of how insane rents have become. Now I’m struggling to see the doctors I’d been seeing before, because they don’t take my out-of-state Medicaid, and I can’t afford to pay the 20% that isn’t covered by Medicare.

I’d tried to stay in New York, but I do not meet the minimum income requirements for low income housing anywhere in New York City. Let that sink in. I am a person who has passed intense government scrutiny to attain “Disabled” status. The government knows exactly how little money those of us on Social Security and/or SSI are provided, and that same government sets guidelines for income requirements in their low-income housing projects so high that we cannot afford to even apply to live there. In New York City, programs like Section 8 (Housing Choice Voucher Program) closed their waiting lists years ago, and those that got on the list are looking at a wait time of over ten years. There are similar problems with housing programs across the country.

(Should the government at the very least be held to treat it’s Disabled, it’s elderly, it’s veterans at an economic level that isn’t BELOW the national poverty line? The US government could end a significant portion of US poverty with one stroke of its inflation calculators and a call to SSI.)

I have been looking into organizations that might help me purchase a home. To this end, I’ve been working on my credit, as much as I can with such a crap budget, and I’ve gotten my FICO score from 500 to 690 in a year an a half’s time. If I could get myself a multi family dwelling, the mortgage would probably be less than I’m paying in rent, and I could collect revenue from renters. Unearned income, like from investments and properties, does not count against my SSD, which would allow me to not only keep my $600 a month, but my Medicare as well. But again, if I have an income more than $1,367 (no matter the source), I will not receive Medicaid (nor SSI) and will have to pay 20% of my medical costs. (Unless I get a Medigap plan? Does it need to be this complicated and convoluted?). Paying 20% of my medical costs, which will undoubtedly involve spinal surgery, could very well be beyond my financial abilities. (20% of $91,066 is $18,200)

One possible means of squirreling away money for myself is a Special Needs Trust, into which secondary parties can deposit funds for the use of someone Disabled, without those funds being counted against them with regards to receiving benefits like SSI and Medicaid. However, that is expensive to initiate and set up. However, the existence and use of an ABLE account has just been passed into law, which is a savings account for the Disabled that provides a similar service as a Special Needs Trust, but it can be started with as little as $50, and annual contributions are capped at $14,000. If an ABLE account exceeds $100,000, SSI cash benefit would be suspended, but Medicaid would not be effected. This seems promising, however, they have a stipulation that the beneficiary must have had an age of onset of their disability before age 26. Now, I’ve been in pain and having complications since I was in grade school, but at 26 I was still working, so I’m not sure I’d meet that criterion.

With all of these factors bouncing around in my head, I am trying to think outside the box.

How much money would I need to generate to ensure that my access to medical treatments would not be impeded by state lines or benefit eligibility, and how do I attain that wealth?

Could I set up a Patreon where I do strange artistic things that are not commercially viable, yet compelling, and get monthly donations sent straight to an ABLE account, until I have enough money saved to invest in some stocks and purchase some lucrative property?

Is this really a system that is working for the disabled, if those of us with medical costs are kept in a financial ghetto, with no incentive to earn an income lest our medical coverage be truncated?