The Conundrum of Receiving Benefits and Working With a Disability

As a person with a disability in the United States and meeting certain criteria, I am eligible for various government benefits.

Growing Up

When I was little my father worked on the railroad. My brother also went on to work on the railroad. Had I been able to walk, I too would most likely have found a job on the railroad. As you can imagine, they don’t design locomotives to accommodate a wheelchair. I would occasionally visit my dad at work and he would let me go on the train. It was always a bit of a challenge for him to walk up the narrow stairs while holding me to get me on the train. I would have to hold the handrail and steady us as he walked up the stairs. Once in the cab, it was a very small space — just big enough to fit two rotating seats for the engineer and brakeman. This was clearly not an option for my employment. Yes, there were office jobs on the railroad, but I always dreamed of working on the trains or doing something with my hands.

My First Benefits Experience

When I was 16 my mom signed me up for Social Security Disability. I am sure she believed this would be beneficial, as getting a job while using a wheelchair can be much more difficult than if you are able to walk. There are a lot of jobs that just don’t work from a wheelchair without major extra effort or huge adaptations. Right out of high school I went to college at Northern Maine Technical College and basically tanked that opportunity by not applying myself. I went home, regrouped and tried again at Vermont Technical College, graduating with a degree in rehabilitation engineering. One would think in an industry that deals with wheelchairs and other related equipment I would have found a job. I only got one interview in over a year from a medical equipment dealer in Miami. I found that it was still going to be difficult, because most jobs required delivery of equipment or being able to stand to measure people and other related tasks.

My First Job

When I was in my early 20s, I got a job assembling guns at Smith & Wesson.  I really enjoyed that job. About three years into my career there, I developed a pressure sore that took two years to heal. Of course they couldn’t just hold my job for two years, so that opportunity ended.  I have also had jobs off and on working for my aunt at a boys and girls club, but that was part-time and not necessarily a way to start a long career.  In total, I think I have worked about eight out of 22 years since graduating high school.

Starting to Figure It Out

I am now 40 years old and have spent the better part of 20 years trying not to lose my government insurance but also wanting to better my life by working toward a career. This is where the conundrum comes in to play. I want to work, but if I work I lose my Social Security and insurance. To make it worth it to work, I need to make enough to compensate for that loss. There have been many times in life I would not have survived without insurance, so losing that would be very critical. It is a huge risk to try to work and not have the best insurance.  Most company insurance requires copays and has a deductible to be met before the insurance pays.  I have had some hospital stays that were in the millions of dollars range.  Granted, there is a cap on what I would have to pay, but when I was on benefits there were no copays or deductibles.

The Facts

While making use of Social Security as a non-blind person with a disability, we are allowed to work enough to make $1180 per month in 2018 on top of our benefits. (Blind people are allowed to earn a higher amount.) With the benefits I was receiving before I started working that would have equaled about $26,500 per year. That is livable in Maine for a single person.  That is all I could ever make without the limit getting increased.  Add in insurance with an average cost of about $5,280 per year and I would need to make $31,780 to break even while working.

I am now working and making $31,200 before taxes and benefits are taken out. Granted my employer does match my 401k contributions, contributes to my health savings account, and pays most of the cost of my insurance premiums.  I am paying significantly less than the $440 average per month. Had I started this process 22 years ago, I would theoretically be making significantly more.

Starting a Career

Now I am working, I sometimes feel like I am a 16-year-old when it comes to being in the working world.  I never had the opportunity to learn what it is to work. Basically, I am starting at the level of a high school kid getting their first “real” job.  I wish I could have benefited from working as a cashier or one of the other summer jobs most kids get. A person learns a lot by starting to work early in life.  There is the interviewing process, learning to work with others, how to handle yourself with superiors, how to manage benefits and just the routine of needing to show up on time and be productive five days a week. By being on benefits I never experienced most of those things, at least not for long periods of time. I did have the short opportunity at Smith & Wesson to gain some knowledge of these aspects of working life.

Learning Lessons

In my recent foray into working life, I have now had the chance to delve into these aspects of having a job. I have gone on a number of interviews and the first thing I notice is that people see the chair. I feel they’re thinking “what kind of accommodations is this guy going to need?” I know I don’t have to talk about it by law, but it is the first thing I address. I tell them what I may need and that I am good at adapting to situations. I give them examples of things I have done that show I am capable.

I also find that I am intimidated by authority. I have never had to really deal with that type of situation.  With time I am getting better at it. In the beginning, it was tough to speak up and say what needed to be said. As far as managing benefits go, I am lucky that I live with Sandy and she is an HR director.  This is what she does for a living.  Without her input, I would have had a very hard time figuring out what would work for me.

I struggled at first with needing to drive an hour to work five days a week and be present for eight hours a day. It wasn’t that I didn’t want to do it. For the past 20 years, I have had relatively the same routine. I had to figure out a whole new routine and as we all know, humans often struggle with change.

Closing Thoughts

As with the other things I have done in life such as flying planes, rock climbing or skydiving, I feel we should give people with disabilities the opportunity to try working early in life. Benefits are great if they are needed, and I definitely needed them at times to get me through life. But I think I only needed them because I never had the opportunity to try working. So before we assume people can’t, maybe we should be asking how they can.