Watch the YO! Disabled & Proud Webinar Training on Youth Achieving CareerACCESS

Webinar: Youth Achieving CareerACCESS - Hosted by CareerACCESS and YO! Disabled and ProudWebinar: Youth Achieving CareerACCESS – Hosted by CareerACCESS and YO! Disabled and Proud

The National Council on Independent Living, World Institute on Disability, Policyworks, and YO! Disabled & Proud recently presented a discussion on advocating for improved Social Security policies for working people with disabilities.

If you are someone with a disability who uses benefits like SSI or Medi-Cal, and you want to have a job, it can be hard and stressful because of the complicated rules and lack of help available to understand it all. Without the right support, you could lose your benefit or health care. The way the system is set up doesn’t make sense. It limits us from reaching our career goals. CareerACCESS is here to help. Together we can work to make the system more meaningful for all of us who want to go to work and earn money.

We discussed these important issues during the webinar, and if you missed it, it’s now available on YouTube at any time. Special thanks to all those who participated and shared their stories during the webinar!

Moderator: Emily Ladau
Panelist: Justin Harford
Panelist: Daniel Mellenthin
Panelist: Kristin Ansell

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.

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.

Help us get closer to reforming SSI by signing our petition here. You can also follow us on Twitter or Facebook!

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

Navigating a Mountain Maze: My Days on SSI

By Hamza Jaka

My name is Hamza Jaka, and I’m a recently alumna of UC Berkeley (Go Bears!) having graduated in Spring 2014. I studied Linguistics, and hope to attend Law School next fall. While I graduated from Berkeley, I’m originally from Fontana, Wisconsin, a very small, quaint town in Wisconsin, with fantastic cheese and great football fandom. Growing up, my small town life was kind of boring, so I quickly looked for many outlets. I tried my hand at acting, studying really hard, and various bees and academic competitions, but something that really appealed to me was disability advocacy. I’d been a strong self advocate, but I really wanted to try and learn more about issues facing people with disabilities across the country and the world. I joined my first non-profit board, as a member of Kids As Self Advocates (KASA) at the age of 14, and was rapidly exposed to a phenomenal world of fellow people with disabilities, and I finally understood the value and power of community. In my role, I’d heard about SSI and the system people with disabilities face as being a massive limiter on our employment prospects. But being fourteen years old, I didn’t understand what that meant.

In the years since, I’ve started a non-profit project in South Asia, been an intern with the American Association of People with Disabilities (AAPD), worked with UNESCO, interned at the State Department, worked for the Berkeley Student Cooperative as a board and cabinet member, helped write and publish a comic book, the Silver Scorpion, served as co-president of UC Berkeley’s Disabled Student Union for three years, and serve on the United States Business Leadership Network’s Student Advisory Council, so I suppose I found plenty of work. However, I’ve always had difficulty finding paid work due to the SSI limitations on earned income and the asset limit. I need the personal care that Medicaid provides, and SSI has helped me to take care of my expenses, but not any more than a solid job could.

I’m currently living in the system, something I thought I could avoid. I’ve been lucky to have a supportive Vocational Rehab counselor, family and friends, without whose help I could not have been able to afford living in Berkeley, DC, or New York. I was also lucky to receive a lot of professional development. These types of supportive counseling made it possible for me to consider working around the country, something I never thought possible. Speaking of my counselor, before I signed up for SSI and went to Berkeley, she mentioned to me that it was a system that had innumerable rules, had few exceptions. It was then I swore I’d learn all the rules, and all the exceptions. I’m proud to say I mostly succeeded on that goal, though the current system is more complicated than a historical linguistics problem set.

However, applying that knowledge can be difficult. When I worked as an AAPD intern, we were provided with a stipend, and being a student, I was eligible for the Student Earned Income Exemption (SEIE), but it wasn’t easy to apply for the exemptions. I had to resubmit my paperwork four times, including a  re submission of my verification that I was a student. It took me two months from the time I started my internship to cash my checks, and my family had to cover a large amount of my expenses in DC. I managed to avoid much difficulty that time, but the future looks challenging. I hope to be an attorney, and novelist, which would place my income above the ticket to work cap in my state, and I’d need a substantial amount of money to afford my personal care.  My story isn’t singular, either, you can read the stories on this website, or stories collected by other organizations like the United States Business Leadership Network. Our stories are why the CareerACCESS Initiative is needed. People with disabilities deserve an equal opportunity to work, and part of that opportunity is the services we need, and we should be able to receive them however we need.

Support Hamza and other youth with disabilities in becoming self-supportive and achieving their career goals by signing the CareerACCESS petition, following our social media sites (Facebook and Twitter), and sharing Hamza’s story! Contact us at if you are interested in sharing your experience or opinion on this issue.