BY CAROLANNE MONTELEONE
Supplemental Security Income (SSI) is a needs-based program run by the Social Security Administration. It does not depend on past work history. The maximum amount of SSI benefits a disabled individual can receive is $750 per month (as of January 2018). If you currently have a monthly income, half of anything you earn over $65 per month will be deducted from the maximum amount of benefits in order to determine your SSI amount. Earned, unearned, in-kind and deemed income must be reported and may reduce your monthly SSI, and different States offer (or do not offer) additional supplemental payments.
THE STIGMA OF SUPPLEMENTAL SECURITY INCOME
I scroll through Facebook and come by a friend’s post that startles me a bit. I sit and read her commentary, then open the attached link to read the article she is reacting to. The article is about people who receive financial help from the government. Recipients are cast in a negative light, made out to be “lazy”, “leeches”, and a drain to society. I close the tab and reread what my friend added above the link. “Must be nice to do nothing but sit on your couch all day and get paid to do it with MY hard-earned money!!!”
I’ve read these articles before. I know these opinions well. Yet, every time I see or hear these jarring comments, I feel a twinge of guilt and a whole heap of sadness. Of course, that’s my internal ableism aiming to make me feel like I’m wrong for accepting assistance. I know that without Supplemental Security Income through Social Security Disability services, I would be an incredible financial burden on my loved ones. I’m lucky enough to have a support system that takes care of me both physically and monetarily, but not every disabled person has that. For those less fortunate, a lack of SSI would result in homelessness and death. I wanted so badly to respond to my friend’s comments but I wasn’t quite sure how to go about it – until now.
WHAT IT COSTS TO KEEP ME ALIVE
I’m going to breakdown what it costs to keep me alive. Hopefully this insight will help my friend (and others like her) understand that disabled people are not “a drain to society”. None of us asked or wanted to be so ill that we can’t work or engage in normal activities with the rest of society.
So imagine this: $623.
Imagine living off of that and only that for a month. You’re probably thinking it’s not a big deal, that it’s easy to budget. But it’s only easy to budget when you don’t have random trips to the emergency room, take about 20 pills daily, and end up with surprise medical bills you never expected. $623 a month for someone with a chronic illness or disability is an impossible income.
Here are my monthly expenses living with gastroparesis*:
- Rent, plus utilities $660
- Clothes $20
- Daily hygiene necessities (toothbrush, toothpaste, shampoo, etc.) $40
- Transportation (car payment/car insurance/gas) $0, $50, $50 (two tanks per month)
- Food (Ensure Clear special ordered $40, other “safe” foods/liquids $30)
- Medication ($220 domperidone, $3-5 for other prescriptions x5, OTC meds)
- Enteral nutrition (formula, feed bags, extensions, syringes, gauze pads, barrier cream, pump rental) (~$600 total)
- Doctor appointments/surgery (including travel)/tests and procedures (anywhere from $100-$1,000)
Calculating the lowest possible total for monthly expenses, it equals out to be $1,885. That’s about three times what I get in SSI. Say I live rent free with my significant other (which, luckily, I do). That’s still $1,225 a month, double what I get from SSI. These estimates are conservative, based on just the bare minimum with no extras and only generic products.
How exactly do I live despite not having enough money to get me by independently? My partner pays for rent, daily hygiene necessities, and food, while my parents take care of whatever else my disability check doesn’t cover (which is mostly everything). It’s both daunting and frustrating to have to rely so much on my loved ones to take care of me. It’s something I wish I didn’t have to do. I would also love to be able to work a full-time job and support myself without the help of SSI.
LOOK PAST THE PAY STUB
So next time you scoff at having a small portion of your paycheck taken out to fund programs like Supplemental Security Income, put a name and face to it. Remember, you are helping people. Illness and disability doesn’t discriminate and can happen to anyone at anytime, so don’t be so quick to judge. If you’d like, I’d gladly give you the seat on my couch all day if I get your healthy body in return.
*Note that all illnesses and disabilities require different treatment, surgeries, and medical aids. These are my personal costs and even someone else with gastroparesis likely has different needs. These expenses are costs after medical and prescription insurance.
Carolanne Monteleone of Pennsylvania is a disability advocate and professional sick person. Between blogging her
experiences with chronic illness, running a small Etsy business of handmade feeding tube accessories, and helping others transition into the world of disability, she spends what little time she has left being a stay-at-home dog mom to an adorable beagle, Quinn. Carolanne enjoys sewing, shopping for candles, and binge watching medical dramas.