Disability, lifestyle, and nerdy thoughts.

The truth about “living off” SSI

Everyone seems to be incredibly opinionated about programs like SSI and the people who rely on them. Some are for it, a lot are really angry about it, and most really don’t understand it. My family has relied on SSI and Medicaid my entire life, so I thought I’d share what it’s really like "living off" government funding.

Everyone seems to be incredibly opinionated about programs like SSI and the people who rely on them. Some are for it, a lot are really angry about it, and most really don’t understand it. My family has relied on SSI and Medicaid my entire life, so I thought I’d share what it’s really like “living off” government funding.

So, I guess we’ll start with a brief rundown of what it is and why we get it. My brother and I were both born with Muscular Dystrophy, and because my parents were under the income limit, we were eligible for SSI and Medicaid.

*Just throwing it out there – I can only speak for my experiences, so if my explanations suck or differ from your experience, let me know! I’m just doing my best to explain my situation. Okay, moving on.*

Medicaid was (and still is) our insurance. We were able to go to the hospital when we needed to without worrying, could see specialists we normally wouldn’t be able to afford, and most importantly we could get our wheelchairs and medical equipment.

SSI is a government program that provides a small income to families like us – those with a low income and disabled kids/members of the household. I don’t know the nitty gritty on who all can/can’t qualify, but that’s how it worked out for us. Because we received it when we were just kids, the checks went to my parents and how much or little we received was determined by their income.

My parents divorced when I was around 7, and my mom wasn’t able to work since she was our sole caregiver. That meant we were able to get the full amount of SSI, and I continued to get the full amount until I recently got a job (I’ll explain more in a sec).

Currently, the highest amount you can receive from SSI is somewhere around $750, give or take a few. It varies case by case, but that’s the max for an individual. Now, I don’t know about you, but I don’t think that’s a lot of money to survive on. I live in a low-income apartment with my mom and brother, and just our rent is more than that.

So, right off the bat, I think it’s pretty clear you can’t really just live off SSI alone, and you certainly can’t be profiting from it, which is a common misconception.

It’s really hard to be poor, especially when you’re not legally allowed to save any money. Yep, you read that right. I’m never allowed to have more than $2000 in my bank account or I start losing benefits. So not only am I struggling to make ends meet, I can’t even prepare for any emergencies because I can’t save any money. I also can’t own property, but it’s not like I’d ever be able to afford to anyway.

Now that my brother and I are adults and no longer legally dependents of my mom financially, our benefits are not determined by her income. Now, it goes off of mine and my brother’s off of his. SSI is a needs-based program, so it makes sense on paper why my income will affect my benefits. In reality, it’s not so simple.

In order to live my life, to pay for things like groceries, utilities, gas, phone bill, etc – I need more than $700. I need a job, and I’m fine with that. Two problems crop up the second I get a job, though.

First: I really can’t afford to lose my Medicaid. My current insurance is why I’m still alive. It’s why I have my wheelchair, went to the hospital every time I needed to (which was a lot), how I had my surgery, and why I’m able to go out and get a job in the first place. Potentially, I could get a job with health benefits, but in this current political climate and my expensive preexisting condition, I don’t know that I’d be able to afford it or even keep it long term. I can’t risk that, so I’m not going to.

In order to keep my insurance, I can’t make more than $30,000 a year. Currently, that’s not an issue since I make NOWHERE near that. But you can see how that affects what positions I could or couldn’t accept. Most people strive for high paying jobs and then promotions/pay raises. Me? I just hope I can get a steady job that I can get by with but won’t pay me too much. Yikes, right?

Second: the minute I start earning money, I’m losing money from SSI. For every $2 I earn, they take $1. Again, it’s a needs-based program so, in theory, I understand this. In reality, it just makes everything a struggle. I can’t save money and I can’t earn too much money. To make sure I can keep my low-income apartment and my insurance, I get an already crappy paying job and then lose half of my paycheck. Couple that with the rampant ableism in interviews and hiring processes, that leaves me where I am now. Barely. Scraping. By. I can’t live off just the SSI, but I can’t really get ahead by working either.

Everyone seems to be incredibly opinionated about programs like SSI and the people who rely on them. Some are for it, a lot are really angry about it, and most really don’t understand it. My family has relied on SSI and Medicaid my entire life, so I thought I’d share what it’s really like "living off" government funding.
[IMG: the view from my screened in patio. The small space is filled with shelves holding lots of plants and small decorative trinkets. There are wind chimes hanging off the door. You can see another apartment building and trees in the background]
This is usually about the time people start giving (unhelpful and unsolicited) advice. “Well, there are tons of programs available for people like you. Why don’t you just apply to them? You’re just not looking enough, help is out there.”

Sure, maybe there are. My family even has a few. None of which are enough to live off of and all of which are tied to my SSI. Which adds another layer to why I have to limit my outside income.

But what a lot of people fail to understand is how HARD it is to get on any program. It’s not as simple as signing up with your name and address. It’s usually an incredibly long and complicated process with hoop after hoop to jump through. They’re invasive and often dehumanizing. Once you get through that, you’re on a waiting list. For years and years and years. Maybe your name comes up, but maybe not. If you live in Florida like me, you can probably bet on not.

The picture that the media paints about people like me who rely on government assistance are so often oversimplified, based on classist stereotypes, and usually laughably unrealistic/inaccurate.

Last week my family was sent into a panic because not only did we get a notice that our rent is getting increased, but the wheelchair lift in our van needed to be repaired. It was the weekend. The one place that can do the repairs wasn’t going to be open until Monday – meaning we couldn’t get it fixed before my next shift. My office is only 4 miles away. The cheapest accessible ride service we could get last minute cost $85. That’s double what I’d earn for the day. It’s cheaper to just miss work, no matter how poorly it’d reflect on me.

Luckily, we were able to get the lift to work manually so I didn’t have to miss work. Next time, it might not work out that way. Still, we had the extra stress on our finances from getting the repairs done. And that’s how our life has always been. It has always been a strain.

You can earn a little money, but not TOO much money. You can never prepare or have anything tucked away for an emergency or unexpected expense. The only thing you can do is hope and pray you’ll be able to figure it out when one comes up.

Forget routine maintenance – can’t shell out the cash unless it’s absolutely necessary. Absolutely forget getting a new car every few years or even every decade. No way you’re able to afford that. Decide what’s more important to you. Having a few extra bucks at the end of the month, or treating yourself to a nice meal or a fun day out once every few weeks. If you decide to spend it, get stoked to be judged. Poor people are never supposed to treat themselves to something nice like anyone else.

It’s always one step forward, three steps back.

The second you manage to get back on your feet, something knocks you back down again. And then the icing on the cake – YOU’RE BLAMED FOR IT! For not working hard enough, for not saving enough, for being “lazy” and “mooching off the government.”

I wish my family didn’t have to rely on SSI. I dream of financial independence and stability. But I’ve been backed into a corner trying to juggle my income, my insurance, my health, what I’m allowed and not allowed to do, all while navigating an inaccessible and ableist society.

My family has been judged for as long as I can remember, and so is every other family getting SSI or welfare or food stamps or any other form of government assistance. But here’s what no one wants to hear: the system forces you into poverty and then it punishes you for trying to escape it. I didn’t break the system, but it is broken.

Next time you want to judge me (or anyone else) for collecting my check, take your anger where it really belongs because it isn’t with me.

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