Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and 
always did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….
I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, 
social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.
But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.
So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.
Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!
So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)
It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.
I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.
If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.
Chronic Rants 
Yeah, the financial aspects gets you. I’d love to retire right now, but all I would have is Social Security, and I’m still a few years away from being able to qualify for Medicare. So basically, I continue working to pay the health insurance, and to stay in my own home rather than subsidized senior housing. Maybe in a few more years, I’ll be able to drop down to part-time along with the Social Security, if I can figure out some way to pay the insurance premiums. Fortunately, I am still able to drag my sorry ass to work, but who knows how long that will continue? Each day gets harder and harder.
Good luck C’sM! I hope you can figure out a way to work part time. I know that some businesses offer benefits to part time workers, but unfortunately they’re the exception, not the rule. It’s really ridiculous how many people stay at their jobs only for the sake of health insurance! The ACA helps, but it doesn’t go nearly far enough.
I’m lucky to have sick leave benefits through my employer, but am currently trying to make the switch to part time work and work from home to supplement the rest of my income. It is SCARY, and I’m not sure how smooth the shift will be given that my health is still so unpredictable, but yeah, being in control of my life and having to be more frugal seems to be, at this point, favourable to the helpless feeling (despite understanding that it has been a necessity thus far) of receiving sick pay. I have faith that I can do it. Luckily I have tons of transferrable skills, and online work is more accessible now.
It’s frustrating that sick pay, whether employer, insurance, or gov., follows such rigid rules that it can actually prevent people from exploring new work avenues. If only I could wean off sick pay while building a new career path… But if I try to earn money while receive pay, that’s fraud! So complicated. I guess I just have to take the plunge.
Fingers crossed we both make it work 🙂
Good luck Brain Storm! It sounds like you have some tentative plans. I hope they work out just the way you want them to! And I’m glad to hear that in the meantime you have some sick pay/insurance coverage. That makes a huge difference, even when it’s not the same amount as a salary would be.
Differences again. I am only allowed to earn £15 a week whilst on benefits.
With your finacial work, would you be able to work from home? Part of the problem of working for me is the whole getting ready business! I hope that a decent job comes up for you. I don’t know why everything has to be all or nothing.
hugs xx
Lorna, that sounds like so little! Then again, I gather that you receive more livable benefits. For comparison I live in a 1-bedroom apartment that is not the cheapest around, but it’s *far* from luxurious. My social security *almost* pays for my rent. I have another benefit that almost covers my groceries. But for everything else. I have health insurance coverage. But for everything else – electricity, car, clothes, any form of entertainment, medical costs that aren’t covered by insurance – I’m on my own. Anything extra I can earn would go towards that. Do benefits in your country cover the same amount, or do you think they cover more?
As for work, yes, I hope to eventually work from home. Right now I’m not quite ready for that, but I’m getting there. Even then, though, I doubt I’d have the energy to work full time.
Nice article and understandable…. I’ve lived in my car for months. Consider yourself lucky. There are so many of us who don’t get a dime. I’ve been unable to walk for 4 yrs. Unfortunately I accepted a lyme diagnosis which doesn’t fall in the disability grid. I suppose I should fight for a slurry of diagnosis since lyme treatment failed. I took my case to federal court and still got denied. They don’t believe me.
Karen, I’m so sorry to hear that. Have you reapplied for benefits? The listed options are narrow, but a good lawyer should be able to help you fit in based on your symptoms. All I can say is, I wish you the best of luck!