The Bureaucracy of Being Disabled


By Alice Wong 

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.

Photo of Alice Wong

Photo of Alice Wong

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. Had reforms such as the ones proposed by CareerACCESS existed, things might have been different but this was the late 1990s. 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 even though it’s with different programs.

I’m glad CareerACCESS is aimed at improving employment outcomes for youth with disabilities. One area that is not addressed that is of importance to youth with disabilities is the marriage equality. For example, two people who receive SSI/SSDI and want to marry may decide not to because their marriage may result in drastic reductions in their benefits. There’s a lot to work that needs to be done, but this is a great start. I applaud the efforts proposed by CareerACCESS and hope youth with disabilities will have more options and incentives to work.

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Alice Wong is a staff research associate at the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is a council member on the National Council on Disability, an independent federal agency. She is also Project Coordinator of the Disability Visibility Project, a year-long grassroots campaign encouraging people with disabilities to record their stories at StoryCorps celebrating the upcoming 25th anniversary of the ADA in 2015. You can find her on Twitter: @SFdirewolf

DISCLAIMER: Readers are invited to add their views and experiences to the entries we post. The blogs we post are not edited; they are the candid and courageous views of real life experiences of young adults with disabilities. Sometimes the blogs we post may not describe current SSI or Social Security rules accurately, but it's important to share how people actually try to navigate these complex and complicated systems.
  1. Here’s another story by a well educated American finding that our government cannot get out of our way. Reminds me of the often quoted “Keep the government out of my Medicare.”

    Government can often start with a good policy and its very next steps are to mire it with complexity to such an extent that it produces “deer in the headlights” more than support for its citizens.

    • It’s right wing policies designed to destroy the programs that are the issue. It’s not the big bad guberment mucking things up, it’s the people that want to use these programs for political gain.

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