The Disability Community Needs Your Help! Help Us Pass the SSI Penalty Elimination Act!

Fallon Marie
Roll with Me Publications
5 min readSep 21, 2023

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  • Author’s Note: This article is being cross-posted in my writing portfolio and in my disability-centric publication, Roll with Me. This article will remain free forever in order to get the word out as much as possible.

Imagine if your country’s government put a cap on how much money YOU can have in YOUR bank account. Imagine if your government legislated you into poverty. Imagine if you were barred from making enough money to live on. Sounds dystopian, right?

The Problem

For disabled people, this is the reality. Despite working from home as a freelance writer for over a decade, I am not ALLOWED to have more than $2,000.00 at a time. For couples, the limit is increased to $3,000. Importantly, this limit is NOT $2,0000,00 per month. The limit means that I cannot have any money over $2,000.00 AT ANY ONE TIME, If I have more than $2,000.00, I risk losing my medical insurance,

As you can imagine, this makes life incredibly difficult and needlessly stressful. On a practical level, this means that I have to turn down work projects I’d love to take. It means that I have to ration my groceries. It means that I can’t save for emergencies. Or a wheelchair van. Or buying a house. Because I’m not allowed to save money without literally risking losing my medical care, I had to turn down the opportunity to have a professionally trained service dog from a program because a professionally trained Husky was simply too expensive. According to the CDC, 26% of the United States population is disabled. That’s nearly one-third of the US population. In 2021, the population of the US was 332,278,200. According to those statistics, this means the disabled community in this country is estimated at well over 86 million people. Most of us live in poverty.

The other day, I heard about legislation that could change all of that.

The Solution

TikToker Aliwheelz made a video last week discussing the SSI Savings Penalty Elimination Act. (HR 5408 & S2767). This bill is a bi-partisan piece of legislation and would do three major things to lift the disabled community (at least partially) out of abject poverty.

The first thing it would do is ensure that payments for SSI (Supplemental Social Security Income) kept up with inflation. Currently, there’s only a COLA (Cost of Living Adjustment) every few years, and it’s certainly not keeping up with inflation, In 10 years, my income has increased by less than $200.00.

Secondly, it would increase the asset limit from $2,000.00 to $10,000.00. While $10,000 per year is still below the federal poverty limit, this asset increase would more than triple the current limit. This would allow millions of people to save more money, work a job that could accommodate them, and more.

The last thing this bill will do is remove the marriage penalty. If an individual on SSI or SSD gets married right now, they will receive 25% LESS in disability payments as a married couple. It’s also not uncommon for people to lose their medical insurance when they get married. This happens because the government counts your spouse’s income as yours the minute you say “I do”. Often, this means that newlyweds immediately lose their medical insurance on their wedding day. Because of this, many couples don’t get married. Often, it’s a choice between marrying the person you love or staying alive and keeping your income.

There is no marriage equality until EVERYONE can marry the person they love.

The SSI Savings Penalty Elimination Act would completely do away with this penalty.

What You Can Do

There is a petition from CureSMA that currently has 32,000 signatures. When you sign, you can e-mail or call your representative directly to show your support. Currently, this legislation is open for public comment. It will be up for a vote in December. While this petition references only Spinal Muscular Atrophy (SMA), this legislation will affect ALL disabled people and their families positively.

Final Thoughts

These asset limits make no sense whatsoever. In an economy where the average rent cost is $2,000.00, the US government expects its population of over 86 million disabled people to live on less than half the money it takes the average person to put a roof over their head. In addition, it is incredibly expensive to be disabled. Here are just a few of the things I need to pay for just because I have disabilities:

-Glucose tablets
-an Instacart subscription
-OTC medications
-all of my service dog’s training and supplies
-and much, much more.

This legislation has the possibility to actually help people live better lives and inject millions into the economy. The ability to save $10,000.00 would change my life. I could train my service dog professionally. I could potentially move out of my apartment to a better one. I could start taking better contract jobs, increase my income, and actually move states. I’ve wanted to move to a warmer climate for YEARS for accessibility, safety, and comfort.

Does this fix everything? No, of course not. Disabled people still face discrimination in the workplace at alarming rates. There’s been a shortage of accessible housing for decades. In 2023, I still get people who are shocked that I’m in college or that I work from home. Despite being legally considered medical equipment, no insurance company will cover the costs associated with a service dog. I called a life insurance company recently and was told they couldn’t cover me. Their reasoning was that I have Cerebral Palsy.

This bill doesn’t fix everything, but it is a step in the right direction. Currently, disabled people are still treated like second-class citizens, We face barriers to employment, housing, and public accommodations. But this is something we can start fixing right now. If you want to actually be a part of fixing injustice, please sign the petition and share this article and Ali’s account to get the word out.

You have the power to change the lives of over 86 million Americans. Please help us tell Congress that disabled people matter and deserve to live with dignity.

Fallon

You can follow my new friend Ali @Aliwheelz on TikTok and Instagram. I am a professional freelance writer. If you’d like to work with me, please email FallonWrites@yahoo.com

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Fallon Marie
Roll with Me Publications

She/her ♿️🇺🇸🏳️‍🌈🤘🏻🦋✝️If you can’t stand up, stand out Writer, cat mom, future therapist, Disney nerd. advocate Hebrews 4:15-16.