Should I Keep My Disability Benefits or Return to Full-time Work?

Amy Baker avatar

by Amy Baker |

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After three years, two denials, and over 12,000 pages of paperwork, I was approved for Social Security Disability Insurance (SSDI) on Jan. 27, 2021. I never thought I’d see the process to completion.

Given my previous denials, I was unsure how the trial phase would go. I often lay awake at night wondering if I was “sick enough” to receive disability benefits.

Single with scleroderma

When I first applied for disability, I was married. My partner took care of the household bills, so I wasn’t too concerned about the amount I’d potentially receive. We had more than enough to cover our expenses, so I’d be able to do whatever I wished with the disability money — save it, invest it, or spend it on my son and me.

I never imagined I’d be on my own again. After that, obtaining disability became my main focus, besides maintaining my health.

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The Challenges of Dating With Scleroderma

Although I now receive benefits, trying to provide for myself and my child on that amount is extremely challenging.

Trying to find a place to live that doesn’t require my gross income to be three times the rent is nearly impossible. I can’t apply for food assistance because I make “too much money” on disability. (Too much? Really?)

As inflation soars, causing food and housing costs to rise, it becomes harder to keep up with the bills. We still need to eat, and my son deserves to be a kid.

The disability dilemma

Recently, my mind has been racing. Should I return to full-time work? My scleroderma symptoms have calmed down since I’ve reduced my stress. My flares haven’t been as bad, and I’ve been feeling much more like my old self lately. I try to take full advantage of the good days.

Still, scleroderma is always lurking just around the corner, reminding me it’s there. It’s like being in a haunted house at a carnival and waiting for something to rear its ugly head.

If I go back to work, I will forfeit my disability benefits. However, the Social Security Administration does have a Ticket to Work program, which would prevent me from losing my benefits if I discover I can’t hold down a full-time job.

SSDI is not a money-making opportunity. In times of stress, I wonder if I made the right decision to stop working and apply for benefits. At first, it seemed like a good choice because I had a partner to help pay for our living expenses. Now that it’s just me, I struggle to provide for myself and my son with what I currently bring home.

The question is, do I give up my disability benefits in the hope of a brighter financial future, or do I stay the course and hope it all works out? I will always have scleroderma and multiple comorbidities.

During this uncertain phase of my life, many emotions flow through me. I want to give my son a better life and provide financial stability for my small family. I know I’ll need to make hard choices, but you will never see me quit. I will do whatever I need to do for my family.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Ron Sasso avatar

Ron Sasso

You are in a very difficult situation! I think a lot of people face similar struggles. I didn't think I would get approved for disability, but I did on the first try. I made pretty good money prior to scleroderma, so my SSDI isn't too bad---but it's still difficult. I work part time (self employed---real estate). There are some days that I think about how much more money I could make working full time...then I realize that the stress will cause scleroderma to progress. I had a month when I led my office in sales---and I had a stressful moment looking down at purple fingers. It's simply not worth it for me. I think that is what you need to look at---more money or more stress and potential deterioration.

I think there are some programs that allow you to work more without losing your disability. But...it still isn't easy. I made a point of buying a small house that I could afford (that's all one level) so that my housing costs will be somewhat fixed and reasonable. Perhaps you might want to look at Habitat for Humanity for homes or something of that sort to at least find somewhat reasonable housing. None of it is easy though!

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Tobey Schwartz avatar

Tobey Schwartz

If you keep your disability payments and return to work part time will you be okay financially? I would not give up the SSDI it is too hard to receive. Disability is also a parachute because we know there can be a period of time of mild symptoms and then without warning there is a period of multiple symptoms that go on forever. Good luck to you and your son on this journey.

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K. Sullivan avatar

K. Sullivan

Hi, SSDI has a program called "Ticket To Work". https://choosework.ssa.gov/ You can work p/t and earn up to a certain amount and it won't affect your SSDI benefits.

You can also as Social Services or you local Independent Living Resource Center for disabled for a list of low income apt. for those on SSDI. You only pay 1/3 of your SSDI check in rent. The wait list can be 1 -2 years or up to 5+ years depending on the area. Get on the lists ASAP, you can always decline to take it but you want to be on it so the time is moving along in case working again doesn't pan out.
I did Ticket To Work for 20 years, I never made enough to lose SSDI and I was always fully disabled. I worked at home a couple hours a week just for food money. I got EBT food stamps but only $16 not much help. But the rent is a huge help. I do get my Medicare paid and I get Medi-Cal/Medicaid so pay zero for healthcare and $1 for meds.

Best of luck.

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Ann avatar

Ann

I would recommend that you coAity benefits and health insurance. If you earn more than $1350 per month for any given 9 month period, you would have to give up your ssdi. However, depending upon your assets, you can keep medicare. Also, if you have a minor child, your ssdi can be increased to cover him until he is 18. If your child is disabled (prior to age 22), you can keep him as a dependent on your social security even after 18. Contact a medicare and disability specialist.

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Sara avatar

Sara

I have been struggling with this decision as well, I currently disability benefits and teach part-time. It is a great situation for me at the moment, but I do often miss my old librarian job. Part of the reason I believe you (and me) are doing better is because we are not working full-time, so the risk of going back also comes with the risk of failing health again. It is a no-win situation really! I am also single; but, thankfully, don’t have to pay to care for a child at this point. Scleroderma is a scary disease and I never want to be back at my sickest days, so I am sticking with part-time. Are you also allowed to work part-time as long as you don’t earn more than a certain amount of money?

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Kim Curry avatar

Kim Curry

Congratulations on being awarded SSDI. Couple of questions though. Were you married? Did your partner leave or pass away? The Ticket to Work program is great, but you have to watch how much you make because you can only make a certain amount in order to keep your benefits. And did they backdate your payment to the date you first applied? Because they should have. That would give you something to bank as a cushion. As both people before me stated, getting disability is not easy by any means and although you feel good now, those flareups can come from out of nowhere. I would keep the SSDI and try using that ticket to work somewhere on a part time basis. Good luck in whatever you decide. 😘

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Jennifer avatar

Jennifer

Congratulations on your approval! I agree with others who say hold on to it as long as you can, because it will help you to having consistent income while balancing your chronic illness life. When I was approved for three years I thought no problem I'll be better and working by the time I have a review...nope ending up doing a review phone call from the hospital. I don't say this to scare you, but it is an earned safety net for you and your son if necessary. Additionally, I have found that self-employment while collecting benefits works well for me because I control my schedule, hours, and the amount of work I take on. I'm not sure I'll ever be able to manage a full-time job again. Best of luck in your decision and thanks for writing your column.

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Keisha M. Currie avatar

Keisha M. Currie

Amy,

After going through the process of obtaining disability benefits it can be stressful trying to determine if you should put that in jeopardy by making an attempt to return to work. You mentioned the Ticket to Work program, but it seems that you are only aware of the bare minimum of resources that the Social Security Administration (SSA) has in place for beneficiaries. SSA has authorized agents such as The American Dream Employment Network, of whom my business is a member of, Person-First Counseling & Vocational Services, who can explain the various stages of the program to you. Each member also has Certified Work Incentive Practitioners on staff to do benefits & wage analysis to determine what you can earn at each stage. This will allow you to make a projection based on your individual case.

I understand that perplexing space you find yourself in, right now. I spent way too much time there myself. But the good news is that SSA wants you to get back to being self-sustaining if you are able to do more than just receive your benefits. Others also mentioned local resources and they, too, are invaluable when you are attempting to transition from the space you were in when you first applied for benefits. The place you find yourself now and all that is waiting for you in the future. Your disease is unpredictable enough. I know it because mine is too. So, you don't deserve to have to worry about making a home for you and your child, too.

Nothing but the best to you!

----Keisha

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Sheri Hol8field avatar

Sheri Hol8field

I was wondering if I have been watching my grand kids for 9 years is that concidered working.and I have been diagnosed with a brain tumor that has taken my hearing in one ear ..virtigo I'm blind in one eye.....I need know can I file

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K. M. Currie avatar

K. M. Currie

Sheri,

Every case presented to the Social Security Administration (SSA) is unique, so I would not presume to know unequivocally how your situation would be handled by them. I would like to offer so hope and the value of my experience with them, though.

SSA does inquire about your Activities of Daily Living (ADL) during the application phase. This includes what you are able to do for yourself and who or whatever else is are living in your home, like pets and such. Therefore, you would not be needing to give a detailed report about your grandkids.

As far as, the activities or amounts of money being considered income that is slightly different. Prior to approval of disability benefits, the financial consideration level is called Substantial Gainful Activity (SGA). If you can show that you, as a non-blind person, cannot earn money from employment over the SGA level of $1,350.00 in 2022, you are one step closer to meeting the requirements for approval by SSA.

You mentioned that you ARE blind in one eye, therefore, your criteria level is higher. Your visual impairments would need to be verifiable by SSA, so keep good records of dates, doctors, etc. But your blind SGA level would rise to $2,260.00 per year. So, if the only thing you have been, and are able to do, is babysit your grandkids, I would say apply for disability might be a good option for you. Especially, when you consider the health insurance coverage that also comes with approval. Medication regime adheres is very important for each of our health problems.

Best,
----Keisha

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John avatar

John

Just today they approved my SSI. I also want to try to return to work but I am scared. The reason why I got on disability was I started hallucinating and was in another world.
I just want to see if I can work again, I am only 47 but I am scared to lose the SSI because it took me 300 days to get approved.
I just don’t know what to do, I have 2 kids that live with their mom and I want to give them the best life possible.
Living on SSI. I will never be able to give my children anything.

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VIRGIN avatar

VIRGIN

I tried the ticket to work. They say you can keep your check and that you don't get reviewed while trying to go back to work. I received several reviews, and lost almost $200 a month of disability, and my Medicaid that helped to pay for my Medicare. When I couldn't work anymore they kept my check at the same amount for the rest of they year. Every time I called I had to speak to someone different and they all said something different, and a couple of them talked to me like I was trying to steal from them even though I reported my earnings from the beginning. It took almost a year to straighten it out. I do not recommend risking your check because you also risk loosing your insurance and it's harder to get back than what they say. One lady at Social security told me that it is their job to say things to you to encourage you to go back to work. And don't let them trick you into self employment because they count dollar for dollar on self employment, and only fifty percent of the first several hundred for working for someone else. It is embarrassing to ask for help from churches and other programs, such as food stamps, low income housing, clothing stores and such, but sometimes you just have to hold your head up and be grateful for what you do have. If you are able to work and not be worried about the insurance then I would go for it, but if you have horrible spells like I do that can last for weeks or months then I would think twice about it. After all, employers want someone who can be there for them when they are scheduled to work. If you can work part time making less than half of what you get on social security along with your social security it would help ease the pain without loosing everything. Or so they say. Good luck to you.
Virginia

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Karl Mitchell avatar

Karl Mitchell

SSDI has literally damned me to poverty! I was put on SSDI at the young age of twenty, when I was a junior in college. Since I only put in towards social security for 4 years before I got sick (part time jobs mind you.) I got scrapings in monthly financial benefits. ( Less than $1k a month) I am in New England. Rent averages $1500 + a month for a 1 bedroom. I know that I am in a unique situation bur SSDI and Ticket to Work should have put me out of my missery 22 year's ago.

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Maria McDonald avatar

Maria McDonald

Keep your disability benefits. We dont know what our next day will be like with this cruel medical condition.
It's bad enough that we have to advocate for ourselves and prove that we are sick.
A doctor at a scleroderma clinic told me that we have to advocate for ourselves. Really? isn't that what the entire Hippocratic oath to do no harm. The systemic racism in the medical field alone is enough to break anyone's spirit.
We don't have the energy to advocate for ourselves, and we shouldn't have to.

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Keisha M. Currie avatar

Keisha M. Currie

Hello,

If you are considering going back to work after getting approved for disability DO NOT do it on your own. Contact an Employment Network EN, first! These agencies are SSA approved, know all of the rules and regulations of the Ticket To Work program, and much more. For example, someone mentioned not qualifying for traditional Medicaid after beginning to earn money. This is a real situation that you could face, BUT there are different levels of Medicaid that can be accessed by beneficiaries. Also, in order to not be reviewed during a work attempt, you would need to be under an EN and making "Satisfactory Progress." SSA is unable to determine this if you handling things yourself.

Additionally, Certified Work Incentive Practiniors (CWIP), ENs too, can assist with identifying and connecting you with the other Medicaid programs. They can also help you make predictions on the effect of the different choices you may make like deciding to work, self-employment, and insurance benefits. CWIPs are largely connected to EN but I am sure a Google search will allow you to find someone in your area. I realize that using CWIPs, EN, or a self-guided attempt is not for everyone, nor is it an easy choice. But I truly believe in the possibilities that the SSA programs offer.

Many people will struggle with making it from month to month on disability. Like someone else mentioned, there may be times when there is a need to seek out community resources. I know that I do it with my head held high because I know that I use my resources appropriately. Sometimes they just aren't enough. I, too, have found that I to advocate for myself when seeking medical assistance. I have encountered more than one type of -ism in my attempt to care for myself. But, I have found that networking with others and trying some of the ideas or retaining some of the information they can help me, in my life. That's why I share information about SSA. They aren't perfect and there is always going to be some drawbacks to a program. Yet, overall it is worth considering.

--Keisha

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