The Bureaucracy of Being Disabled

Alice Wong explains how the bureaucratic systems of support that people with disabilities are often connected to chip away at people's dignity and aspirations. MySupport empowers individuals to successfully navigate these systems while leading the lives they want.

A long time ago (the 1990s) when the people used dial-up modems and AOL as their email provider, I was a teenager in suburban Indianapolis itching to get out, go to college and earn some cold hard cash.

I have spinal muscular atrophy and used a wheelchair most of my life. Up until I was 18, my family provided all of my personal care. Once I turned 18, I applied for Medicaid and SSI. Having Medicaid allowed me several hours of home health per week. The agency model was the only option in Indiana during that time so I had attendants helping me with personal care and light housekeeping while I was a student in college. While I had very few hours per month, it was a huge improvement in my life. It eased the tensions between my family members and me and I became much more self-sufficient.

Having SSI was very helpful as well although I did not depend on it for housing, transportation or the basic necessities of life. SSI did provide support to offset many costs of being a disabled person—there’s a lot of stuff people with disabilities have to pay for that aren’t covered such as personal care supplies and other adaptive aids.

While I was an undergraduate, I worked less than 10 hours/week so my income did not impact my SSI very much. I kept my records, filled out the paperwork, went to my annual appointments to maintain eligibility, the whole bureaucratic dance that people with disabilities perform in order to survive and thrive.

This all changed when I moved to California for graduate school. I found out the fellowship stipend I received did not count as income. However, when I started working as a research assistant part-time, this is when my troubles began. Work is not static—not all jobs are typical 9-5 job where the monthly income is a constant amount. This is especially true for intermittent, part-time work. My hours varied depending on the projects I worked on.

I submitted my paystubs and was diligent in informing my local SSA social worker about the changes in my income. The lag time between reporting and adjustments in the amount of SSI I was supposed to receive really bit me in the ass. About a year into graduate school I received a letter from the SSA saying I was overpaid $2000 and had to pay it back.

Can you imagine getting a letter like that when you don’t even have that amount in the bank?!? I was stressed out enough with my classes and living in a new city. Now I had to worry about paying back the government money that I already spent. Despite following all the rules and doing everything correctly, it felt like I was being penalized for working.

My story is not unusual, with many people I spoke to this is typical. Fluctuations in income can wreak havoc on a person’s SSI amounts and potential overpayment. The scary thing is a person doesn’t realize they are being overpaid until months after the fact. This vicious cycle and the fear of losing SSI and other benefits linked to it (e.g., Medicaid, Medicare) deter many from trying to find steady work and maintaining their employment.

It is difficult enough as a person with a disability to find a job and keep it. Dealing with the looming threat that I could possibly owe the government thousands in the future was too much for me. Luckily, I realized that I could still receive Medicaid (Medi-Cal in California and In-Home Supportive Services) without receiving SSI. Once I discovered that, I ended my relationship with the SSA with much fanfare.

This situation is unique because I had resources to make up for the loss of SSI. I came from a privileged background where I was going to be ok if I didn’t have SSI. And I know this is not the case for a majority of people with disabilities who do not have this option.

For me, stopping SSI was the best decision...  In short, I continued to work as a research assistant and after graduating I became a Staff Research Associate at my university. I am able to work almost full-time by participating in California’s 250% Working Disabled Program. This program allows me to remain eligible for Medi-Cal and most importantly, receive vital personal assistance services from IHSS while earning up to 250% of the federal poverty level.

I don’t think many people truly understand the invisible work that people with disabilities do everyday. Stuff such as photocopying pay stubs, mailing them on time, taking two buses to go to your nearest SSA location, waiting in lobby for your appointment for hours even though you are fatigued, these things all add up. From dealing with daily microaggressions in public to the myriad of bureaucratic tasks that are required if you receive services and benefits, these realities can erode a person’s sense of self. Sometimes I think there’s nothing more dehumanizing than when a person goes to their local SSA office with a question about their benefits or applying for benefits for the first time. I’ve been there; I still live it.

*This is an edited version of a blog that originally appeared on CAREERACCESS, community based SSI reform proposal.