By Sarah Amin
As a recent college graduate in the summer of 2010, I was preparing for my big move to Washington, D.C. to attend graduate school at American University. Having interned in D.C. while in college, I had a sense of how daunting it could be for a student to secure affordable housing in a safe and accessible area near a university while managing the costs of living, transportation, and health care in one of the most expensive cities in the nation. Moreover, as a wheelchair user with an autonomic condition that limits the time I can function outdoors, I had a number of other challenges to consider in my transition to city life.
I had been a Supplemental Security Income (SSI) recipient throughout my years as an undergraduate student, and I found it to be helpful in offsetting expenses when I was unable to work part-time. As I approached my mid-twenties, however, I wondered how I could build my savings while getting my education, and also adhere to the SSI program’s strict rules and limitations. As a young student with a mobility impairment, I faced a complex set of obstacles, including the search for an accessible apartment featuring often rare amenities such as elevators and an in-unit washer and dryer. In my experience ADA-compliant housing was more likely to be found in new or recently-renovated developments, and in relatively affluent neighborhoods. For access to public transportation, I needed to live close to a Metro station, where again, the cost of living is much higher. Additionally, I had health care expenses to consider. How was I to achieve a comparable quality of life to my peers within the $2,000 monthly cap on assets set forth by the Social Security Administration? There was little left over for incidental costs and saving for the future was simply out of the question.
SSI benefits are meant to assist those who are “unable to work,” so that they can afford basic needs. The program has operated on the assumption that the need is temporary and that the funds are sufficient, when in fact, it sustains a hand-to-mouth existence for many young people with disabilities. The monthly asset limit contradicts conventional wisdom about saving and money management that so many parents are eager to instill their children as they enter adulthood. Although I was able to remain on my parents’ health insurance plan while I was in school under the Affordable Care Act, the plan did not fully cover a dental procedure I needed, labor costs for wheelchair repairs, or a number of visits to the hospital for urgent care. Consequently, without the opportunity to save, I was forced to borrow cash on short notice to cover these expenses.
Upon graduating I was happy to accept a position at a large grantmaking organization that provided me with enough to cover my expenses and allow me to begin saving for my future. Given my prior experiences receiving SSI benefits, however, I understand firsthand how, contrary to its intent, the program prevents people from achieving self-sufficiency through financial planning. Just as the benefits program has been criticized for its disincentives to seek work, it is also a disincentive to effectively and responsibly manage money. Personal finance experts recommend setting aside six months’ worth of living expenses in an emergency fund, but SSI effectively discourages planning beyond the end of the current calendar month. Without a net to catch us when we fall, we stagnate and we hesitate to take the leaps that are often necessary to reach the next big educational or career opportunity.
Since my time in graduate school, I have been thrilled to see that these concerns are gaining national attention and that initiatives like CareerAccess have emerged to address and mitigate them. CareerAccess will allow disabled individuals to determine their financial futures based on their own visions and potentials, rather than on a cookie-cutter estimate of their needs. I hope that this will allow young people and job seekers with disabilities to reclaim their futures, without the fear of sacrificing their personal and health care needs.
Many people like Sarah face challenges because of current Social Security disability benefits policies. You can help Sarah and other young adults in similar situations by signing our CareerACCESS petition to reform current federal policies to allow young adults with disabilities to pursue their career goals and achieve independence. You can also follow CareerACCESS on Facebook and Twitter and share our updates and posts.
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.