The Question of Working While Disabled

Today is one of those – I am bear, bear is me – type of days.

I woke up feeling okay, but was hit with an incredible amount of pain that shifted to brain fog throughout the course of the day. I’ve tried to desperately focus on a lot today… but even my regular journaling presented a challenge.

I woke up later than normal. I don’t feel bad enough to take medicine, but I don’t feel all that great.

I tried to decide what I wanted to do today, but so far I’ve only found success in eating my meals on time and drinking some water. I’m too spacey to focus in on editing pieces for my book. I’m in just enough pain that turning on the overhead light to paint is less than desirable. I could respond to a few letters I’ve received, but I simply don’t have the motivation.

I even tried to focus in and a write a piece about brain fog… except it didn’t make a whole lot of sense.

And so, at 4:00 PM, I finally have “started” my day and found a bit of motivation.

I decided to find something almost mindless to do. One thing that has popped up into my mind a lot lately is the idea of taking on remote work in a minimal/part-time capacity. And so, I took to Google to try and find some answers to my questions. This mindless search sparked my interest enough to break through the majority of my brain fog.

Currently, I am on Social Security Disability and receive monthly payments each month to assist in sustaining myself.

Although back-pay has made me feel a bit more financially secure, my parents do cover most of my costs so the actual payments I receive each month aren’t fully being spent. But the payments wouldn’t be enough to cover rent for my own apartment if I felt comfortable moving back out.

Which brings up the important question: How the hell does anyone actually live off of their Social Security Disability Income?

Certainly they must have additional income coming in, or like me they rely on someone else to cover the actual costs associated with living.

I want to work. I have absolutely loved having the time to focus on my blog and sharing my story, and connecting with other people. An opportunity exists to continue my work with a part time position – I won’t get into the details as nothing is set in stone at the moment – but the opportunity exists. And when one opportunity arises, they tend to continue slowly popping up.

At the moment, I’ve recognized what my capabilities are. I’ve got a few productive hours that span most of the afternoon. I can work from the comfort of my couch and I can work on my computer, even if I need short breaks here and there. Even on more severe pain days, I can still have productive time, I just may be a bit slower and less on my toes.

It sounds like I’ve got a great foundation to build upon, but the list of things I can’t do is much larger. I’m truly limited to 20 hours a week and shorter shifts than a standard 6 or 8 hour work day. I can’t work during the morning as I’m often too sick, and usually still sleeping. I cannot go someplace else to work as most days I can’t safely operate a vehicle. I can’t work under bright lights. I can’t work with much noise. I can’t be on my feet while working. I also have to be mindful of doctors appointments and the lifestyle program I am starting next week. I have to have access to my ice packs and my essential oils and my sunglasses…

Social Security has a program called Ticket To Work that exists to help disabled individuals get back on their feet and create a plan to be reintroduced into the work force.

However, this program is there to assist individuals who want to replace their existing benefits with income and begin working full time. The goal is financial independence. That is not my goal and this program does not exist for me.

My goal is to supplement the income I currently am receiving in hopes of being financially stable enough to go back to living on my own. My goal is also to test out the amount of work I am able to take on without making my condition worse. I am in no position to begin working at a full-time capacity and my migraines are not improved since I stopped working.

The difference is that I’ve gotten to a stable level where I recognize what I may be capable of. This mirrors my largest concern with disability benefits. I am not improved, my condition is still very present, but if I start a part time position could they view it as a reason to discontinue benefits?

There is a threshold that is updated each year that exists under the concept of Substantial Gainful Activity. This is what the government uses to describe how much work one can do based primarily on the amount of income earned. For 2019, that amount is $1200 a month. Essentially this means that an individual earning under the $1200 (disability/retirement payments not included) should not be penalized or have their benefits taken away as they aren’t engaging in Substantial Gainful Activity.

Based on the Ticket To Work Program, you have 5 years where you can continue to receive your benefits as long as you earn on average lower than $1200 a month. This part is also incredibly unclear, as it introduces a new amount of $800 being the amount you can’t go over if you want to keep your existing benefits in full.

For me this is difficult to understand. If I had an additional $800 a month, I could afford rent and groceries while still having a bit of money left over. If I hit that $800 and they decided to reduce my existing benefits that comfort level goes away.

Another thing discussed is the concept of reviewing disability from a medical perspective based on earnings. This is fuzzy, if you’re already up for review the review will still take place – so in my case my review scheduled for December will take place regardless of me earning anything. But, for individuals participating in the Ticket To Work program, they cannot be subject to review during the trial period. This is a difficult area to understand as you need to factor in the type of work being done, and you shouldn’t be considered “not disabled” because a company has made proper accommodations for you.

It appears that the medical aspect is slightly more protected than the financial aspect.

One bit that is concerning is the idea that for “self-employed” individuals they are limited to 45 hours of work each month or roughly 10 hours of work per week. This is contradictory to a “part-time” position such as one I’m interested in that would be 20 hours a week. Why the hours would be different doesn’t make complete sense to me.

On top of that discrepancy, there’s the limit on how much you can earn. Based on the $800 figure, you’re limited in a 20 hour work week to around $10 an hour, with $1200 you can make $15 an hour. Now, for an individual like myself looking into remote work, this poses a problem for positions based in states that have a $15 an hour minimum wage. They also can decide to re-evaluate benefits if you are earning more or less than the $800 – $1200 range:

Snippet from Disability Benefits Organization

Essentially, the Ticket To Work program provides a bit of a safety net. You have to exceed $1200 on average for a total of 9 months (not consecutive) over a period of 60 months to end your “trial” period that allows you to keep your existing benefits.

Trying to dig deeper has left me with a lot of questions. The Ticket To Work program isn’t designed for part time work, but do the general rules still apply to income for those receiving disability payments if they haven’t opted into the voluntary program?

Obviously, the idea of not relying on any form of Social Security payments is ideal and the potential of having a part time position that could provide enough income to replace the payments is great. But, to feasibly live I need a larger amount than the $1200 limit and there isn’t really a guideline saying if benefits would totally go away or if they would simply be reduced.

The most frustrating aspect comes in not really having a place to go for answers. Getting a hold of the Social Security office can take all day, and often times they don’t have the answers for you. So you end up being rerouted to other offices who reconnect you to other offices all over again. By the time I would get to someone who could help, my migraine would push me to simply disconnect the call.

The other problem I constantly face, is the “what if” factor of my actual medical case. I was incredibly fortunate to be approved on my first try, especially for a condition that most of the world doesn’t even believe is real. But, would simply attempting to work – even if I ended up having to stop – or attempting to take a few online college courses to maybe one day finish my degree suddenly be enough to revoke the disability status? I would hope not, especially since the only work options I’m considering are 100% catered to my condition.

There’s a lot left up in the air, and it doesn’t deter me from looking for part time work but it certainly leaves more question than it answers.

Resources truly aren’t available and easy to access, meaning any answers I get are anecdotal at best. Social Security works primarily on a case by case basis, so what may be true for one person may not be for another.

And so, what was supposed to be “mindless” research has left me once again looking my teddy bear. Face down, on the floor. Exhausted. Confused.


2 thoughts on “The Question of Working While Disabled

    1. When I received my approval letter it specified in the letter that my review period was 1 year. They range from a year to 2, 5-7, and 10 I believe and it’s based on your condition, new medical options coming available and information your doctor provided based on estimated time of improvement.


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