Redefining Disability for the Social Security Administration

06/29/2016 12:35 pm ET Updated Jul 13, 2016

As we celebrate all the progress people with disabilities have made since the passing of the ADA more than 25 years ago, it's time to shed light on an area that hasn’t been part of this progress. The time has come to redefine disability so people with disabilities can reach independence and self-sufficiency as they achieve their career goals. We must focus on improving the employment rate of people with disabilities by removing the work disincentives they face.

54.4 million people in the United States have some type of disability, representing 18.7% of the total population. Only 35% of Americans with disabilities have full- or part-time jobs, compared to 78% of those without disabilities.

The Social Security Administration (SSA) defines disability as “the inability to engage in any Substantial Gainful Activity (SGA) due to a physical or mental impairment that has lasted or can be expected to last for a continuous period of 12 months or to result in death.” For years, this definition has forced people with disabilities to prove their inability to work in order to be eligible for and receive disability benefits through both the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs. This has acted as a barrier to the employment of people with disabilities. It sets low expectations of people with disabilities in the workplace, and inhibits early intervention to assist them in achieving their full career potential. It ignores the high cost of disability and the importance of employers providing workplace accommodations, instead using benefits to subsidize the inability to work. Among the most affected are young adults with disabilities trying to enter and remain in the workforce. 

Jimmy Curran grew up with Spinal Muscular Atrophy (SMA) type 2. During his time at Temple University, SSI allowed him to be independent and thrive on a college campus. However, after he graduated, he felt SSI had become “a curse,” explaining, “[SSI] limited me in my job search as the system is fragmented across state lines. Also, my eligibility for medical assistance was contingent upon my eligibility for SSI. This created a dilemma because once I got my job, I had to worry that I would lose my medical assistance benefits as well as SSI if I took the position.” The definition of disability has prevented many from seeking advancement in their careers because achieving it would threaten their ability to receive disability benefits. As a result, many don’t work at all or work just enough to continue receiving benefits, ending up under the national poverty line.

Kay McMillan, a student at North Carolina State University in Raleigh, is facing similar difficulties. Instead of being excited about starting her career once she graduates, she lives in fear of losing her benefits if she finds a job. “I regularly fear that I will lose my benefits upon graduating college and being gainfully employed,” she says, “causing me to be stuck between a rock and a hard place. I am not able to live on SSI alone, but I couldn’t pay for my personal care assistants or live independently without SSI. I would have two bleak options: either have a job and live with my parents or keep my SSI and live with my parents because I wouldn’t be able to afford to live on my own.” Those who receive benefits have to choose between financial assistance and striving to reach their full potential in their careers.

It is time to reform the definition of disability by eliminating the requirement for people with disabilities to prove their “inability to work” in order to get the supports necessary for them to enter, stay in, or re-enter the workforce. Removing this requirement from the definition of disability will fundamentally change the principles of SSA’s disability benefits programs and improve the employment rate of people with disabilities.

The current definition reinforces negative stereotypes. After graduating from UC Berkeley in 2013 and struggling to find a job that would allow her to maintain her benefits, Erin Tatum explains, “The most bitter pill to swallow is feeling like I’m confirming negative disability stereotypes by being viewed as yet another unemployed disabled person who will presumably live with their parents indefinitely. I still have dreams. I still have goals. SSI limitations won’t change that. I’m determined not to allow SSI to prevent me from living the life I choose.”

People with disabilities should have the equal right to enter the workforce, earn competitive wages and pursue career advancement as much as people without disabilities. Reforming the definition of disability will break down the barriers that the SSA has created for the employment of people with disabilities.

The World Institute on Disability (WID), National Council on Independent Living (NCIL), and PolicyWorks have partnered up and designed CareerACCESS, a career-building alternative to the Supplemental Security Income (SSI) program for young adults with disabilities, ages 18-30.

CareerACCESS is a community-driven proposed program to reform the current Social Security Administration’s Supplemental Security Income Program (SSI) rules so that young adults with disabilities can work and achieve their full potential without risking losing their disability benefits. CareerACCESS will reform the SSI program by providing an alternative benefits program for young adults with disabilities, ages 18-30. This program would be piloted in up to 5 states with services and supports for career-building youth to save their assets and keep their disability benefits while they build their careers. Participants will drive their own Individualized Career Plan (ICP) supported by coaching, counseling and employment support services.

Learn about the CareerACCESS initiative to reform the current Social Security Administration’s Supplemental Security Income Program (SSI) rules so that young adults with disabilities can work and achieve their full potential without risking losing their disability benefits.

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