Shortchanged by SSI: A Counterintuitive Path to Financial Security and Independence

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. 

Our CareerACCESS Update – Spring 2015

Young Adults with Disabilities Join CareerACCESS Core Team

The CareerACCESS Core Team has grown to include young adults with disabilities who are passionate about advocating for changes to Social Security policies. Welcome to Emily Ladau, Andy Arias, and Daniel Mellenthin!

Social Security Administration (SSA) Holds Listening Sessions

Listening Sessions will be held quarterly throughout 2015. During the sessions, five young adults who are Social Security Income (SSI) recipients will share their personal stories of the challenges of building careers on SSI. The sessions will feature a welcome and opening remarks by Bob Williams, Senior Policy Advisory, SSA. Then, each young adult will share their stories, followed by a question and answer period and a summary. The goal of these listening sessions is to inform the SSA about current issues Social Security policies and how CareerACCESS can serve as a sound solution.

Outreach to Legislators

Young adults with disabilities will be contacting legislators and their staff to educate them on current employment-related barriers and the value of CareerACCESS. Staff of members of the Senate’s Health, Education, Labor, and Pensions (HELP) Committee, the Senate’s Appropriations Labor, Health, and Human Services Subcommittee, and the House Ways and Means Committee will be urged to attend a forum CareerACCESS is planning to hold in Washington DC this July.

If you are a young adult with a disability who is affected by current Social Security policies and want to see the policies changed, CareerACCESS needs YOU! CareerACCESS will provide you with all the information you need. To learn how you can get involved, email us at ourcareeraccess@gmail.com.

CareerACCESS Receives Grants from Wells Fargo, Walter and Elise Haas Fund and Thomas J. Long Foundation

CareerACCESS would like to extend a heartfelt thanks to Wells Fargo, the Walter and Elise Haas Fund, and the Thomas J. Long Foundation for providing grants that will allow our team to continue working towards our goal of developing pilot programs for Social Security policy reform

Connect With CareerACCESS on Social Media

We’re proud to share that the number of CareerACCESS supporters is continuing to grow across social media! Join us on Facebook and Twitter as we gain momentum and move forward.

We also have a petition on Change.org that has garnered nearly 550 signatures so far. Sign and share the petition to show your support for CareerACCESS. Be the change!

CALL FOR BLOGS: Share Your Story on the CareerACCESS Website

If you’re a young adult with a disability between ages 18-30 who has experienced barriers to employment due to Social Security policies, CareerACCESS wants to hear from you! Contact us at ourCareerAccess@gmail.com and we’ll tell you how!

Here are some examples of recent blog posts:

Stay Updated

Subscribe to our mailing list

Ready, Willing and Disabled: On Being Determined To Work

By Kathleen Downes

I am twenty two years old. In a few months, I will graduate with honors from the University of Illinois at Urbana-Champaign. I want to be a social worker and a disability activist. By every official measure, I have successfully transitioned into that shadowy place with a notorious lack of information- adulthood with a disability. “Disabled adult”- it’s a title that attracts little public concern in a maze of government programs designed as though we never grow up. Twenty two is a pretty standard age to “grow out” of many disability services as though the supports and funding will no longer be necessary with the dawn of adulthood. “Silly rabbit, Medicaid waivers are for kids!” Oh. Is that not how the phrase goes? I totally meant to say Trix. Anyway, now that we have established that disabled people do not live in Neverland, let’s talk about a grown up thing that remains a big scary frontier, even more so than realizing that Mom can’t always be there to tell you what is microwave safe…. That scary frontier is employment.

Many are quick to judge, and think that finding work with a disability is a mere matter of effort. Oh, if only. The way our Social Security system is set up creates huge barriers to our inclusion in the workforce. As some of you may know, Medicaid is the only health insurance program that will fund certain essential disability related items and services such as consumer directed personal care assistance. Furthermore, private insurance often offers insufficient durable medical equipment coverage, making it difficult to afford power wheelchairs. Policies with limited durable medical equipment coverage may only give a small fraction of the money required to buy a properly fitted chair with needed features, while the rest must be funded by private pay or medical savings accounts. Thus, many of us rely on Medicaid for sufficient coverage of equipment we can’t live without… things we need to survive, but are treated as luxury items by the healthcare system.

In order to qualify for Medicaid, the rules require recipients to remain in poverty just to get the services they need. Too much income, and you kiss those services goodbye. It is not as simple as getting a job and using what you earn to fund those services yourself. Personal care assistance, which enables me to do basic things like bathe, dress, use the bathroom, and prepare meals, costs $30,000 to $40,000 a year, possibly more. That doesn’t even account for the price of a power wheelchair. They can cost up to $60,000 with all the bells and whistles. Obviously, these expenses represent most, if not all of the average person’s annual salary, frequently making private funding of the services we need to live impossible. In order to remain eligible for Medicaid, the resource limit is $2000. Yes. You read that correctly. Two. Not twelve. Not twenty. Two.

Recently, the ABLE Act passed. This was encouraging, because it allows for the creation of special accounts for disability related expenses. ABLE accounts allow for some savings that will not affect benefit eligibility. However, there are limits to what types of expenses qualify. What’s more is the ABLE Act only presents a solution for people disabled before the age of 26, and more importantly, only for people who have money to save in the first place. A meaningful change in policy will require the contributions of anyone and everyone with an interest in justice. Our work begins with getting the word out through platforms like CareerACCESS, where our voices and talents are valued.

I will always continue to work hard, to love life and to make jokes about how the government will buy me a shiny new wheelchair, but only allow me enough money to buy lollipops and an accessible cardboard box. These ridiculous policies will not steal my joy. But sometimes in my quiet moments, as I see my able-bodied peers getting jobs and complaining about having too many interviews instead of too few, it is hard not to grow disillusioned. When people make those comments, they don’t mean to be ignorant, but still they are overlooking the fact that they have been granted the dignity of work while so many others have to sit on the sidelines to protect their basic care. No matter what the job is, they have a chance to contribute and be rewarded for it. The denial of the same opportunity for people with disabilities is a moral and economic outrage. Enough is enough.

Many people like Kathleen face challenges because of current Social Security disability benefits policies.  You can help Kathleen 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. 

For more about Kathleen Downes, visit her blog: The Squeaky Wheelchair