SSI, the Cage.

By Andy Arias

I grew up in the foster care system and being someone with a significant mobility disability I was assuming that social security was the only way for individuals to survive. There were no examples of people with disabilities that I was around that were working and contributing members of society. I remember saying to my foster mother once, “Am I going to be homeless when I grow up?” All I saw growing up was homeless panhandlers in wheelchairs on the street.

This was one of my biggest fears. As I grew older I knew that I needed to do more in my life, that I had to fight for more than just the $750 that my foster family or my mother got to take care of me. I had no control of that income when I was a youth and I felt like it was this charity given to me because I was diseased or sick.

As I moved out as a 17-year-old, I then realized I needed to live on Social Security for a bit to get my bearings. I decided that the $750 that I received a month was not enough to have any kind of a semblance of a life. I had no idea that there were other supports such as regional centers or the Department of Rehabilitation to help assist me in these transitions.  So instead of relying on security paycheck that would run down the 5th of the month after I paid rent, I decided to get a job and finish high school. I was working two different jobs and hoping not to be poor for the rest of my life. I had no idea that my disability would require me to have regular medical care as I aged into my disability. No regular health insurance would provide for my durable medical equipment or surgery that I needed and I had no idea of the consequences that it would cause. So I continued to work with ignorance of the system and what the damage would be later on to me working or receiving medical benefits.

Here in lies the problem with the system I worked in order to survive, I work so hard that I did not pay attention to the fact that Social Security needed to know every cent that I was making even if I reported the income. I had no idea this was going to affect my healthcare later on in life and know that I needed to be in the security cage in order to maintain my freedom and independent life. This Life ideal needs to change for persons with disabilities. We cannot be reliant on a system that only allows us to climb so high but yet penalizes us for climbing higher to reach our dreams. If I would’ve known what I know now, I would’ve done the same thing but been very cautious and hid as much information as I could so I was able to maintain the benefits for my future. This system needs to change for future generations we need more incentives for jobs and more incentive to get out of the boxes that society places on people with disabilities.

There is no system set up to stop the fear for young adults with disabilities that want to get off social security benefits, specifically SSI. There is no system set up for foster youth with disabilities that prepare them to be independent and thriving individuals. Group homes that youth sometimes get placed in are just another way of institutionalization. Point of fact, Social Security is only supposed to be used as a stepping stone to achieve career or vocational goals. However, the way our society looks at disabled individuals is if you have a disability, social security is your only form of income and therefore you are less valued as an individual. I sometimes feel that social security is a way of keeping individuals right where Society wants them in order for them not to organize thrive and threaten a system.

CareerACCESS would be the beginning steps to assist young adults with disabilities who want to live, thrive and work in the community to get out of the social security cage. Maybe even make them more independent than they ever dreamed.

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

Youth and CareerACCESS: The Taste Test

By Justin Harford

During our week at the 2014 conference of the National Council on Independent Living (NCIL) advocating for CareerACCESS, a series of programs and supports designed to make it easier for young adults with disabilities to find and hold a job, it was evident that it had the support of those for whom it was designed. In fact,  a group of approximately 10 such young adults, with backgrounds in law, advocacy, the nonprofit sector, and research enthusiastically joined up with the CareerACCESS initiative when they learned what it was about. Yet based on many conversations that the CareerAccess team had with directors of government agencies, think tanks and nonprofits it was also evident that the higher-ups would need to hear from those supporters before anything could move forward.

Young adults’ stories exchanged over the course of the conference gave the designers of CareerACCESS and those for whom it was created a sense of the imperative nature of the problems created by the present Social Security system. I listened with interest as they recounted their own challenges with the way things are, and noted how much I could relate from personal experience. A disability rights attorney from Florida reflected on how many more paid internships she would’ve had as a law student, if she was not living under the fear of losing access to Medicare, which at the time was providing her with much needed and irreplaceable medical support. Another individual expressed concerns for how his new state of residence would pull his health care upon finding out about the modest income from his nonprofit job. By the end of the week, the initiative was invigorated with the youthful energy of those who had pledged their unique abilities and skills toward its passage.

Now, the conference is over, but the youth team continues to work toward the implementation of CareerACCESS. Twenty-year-old Tailor, a student at American University and intern at 2Gether-International is interested in researching and compiling a policy report, which will make the case for CareerACCESS. Daniel, an employee of Paraquad, a Missouri nonprofit serving people with disabilities, spoke about the importance of CareerACCESS at a meeting involving key leaders of federal agencies including the Department Of Education, Social Security and Health and Human Services, and is now connecting with young adults in his area to garner more support. Systems Change Advocate Andy Arias of Orange County California spoke with several representatives from his state, inspiring many to ask how they could help. He has also volunteered to help raise funds for CareerACCESS to move forward. I also spoke to Congresswoman Barbara Lee’s staff, and defended my resolution, calling upon NCIL to advocate for the elimination of the inability to work test in determining Social Security eligibility, which ultimately got adopted.

CareerACCESS has passed the taste test, but it cannot go forward without public support, so we need people like you to lend a hand. Our blog at, where young adults with disabilities write about the barriers that the current system has placed in their path to economic self-sufficiency, always needs more entries. Please contact us if you are interested in sharing your story. Members of Congress also need to know that their constituents support these kinds of reforms. Finally, the initiative always needs more supporters, so make sure that your friends and family know about the issues in Social Security for young adults with disabilities and the solutions proposed by CareerACCESS. You can follow CareerACCESS on Facebook and Twitter to stay updated on its progress and how to get involved. Also, you can sign and share the CareerACCESS petition.

NCIL Youth Lead the Way on CareerACCESS

The World Institute on Disability (WID), the National Council on Independent Living (NCIL), and PolicyWorks have been working on CareerACCESS, a federal policy initiative that creates an alternative program for SSI youth that want to build careers.  NCIL youth introduced CareerACCESS to NCIL members at the 2013 NCIL Pre-Conference.

This year a larger number of NCIL youth and young adults have taken on new leadership roles on this issue; the CareerACCESS reform momentum is building.

Justin Harford, a 26 year old member of the CareerACCESS National Work Group , and new co-chair of the  NCIL Subcommittee on Employment and Social Security, introduced a  formal Resolution to the NCIL membership at this year’s NCIL Conference calling for Social Security to change its definition of disability.

Justin reports:

“I really appreciated people’s input on my comments at the opening plenary, as Co-Chair of the subcommittee on Employment and Social Security. All of the remarks that I received were positive, and it was clear that people believed in our mission of eliminating systemic barriers in Social Security, which up to this point have made it difficult for the next generation to find and hold employment. The fact that, out of all of the legislative priorities of 2014, CareerACCESS was the one that delegates most often mentioned to their representatives, shows that this issue is important to people with disabilities. In addition, the positive responses from legislators suggest that this is a priority which will gain traction as the discussion on Social Security ramps up in the months leading up to the 2016 election.”

Photo of Barbara Butz, Justin Harford, and Bryon MacDonald (CareerACCESS team members) at the NCIL 2014 Rally with the White House behind them. access, advocate, allen, allie, bryon, cannington, career, careeraccess, conference, council, disabilities, disability, employment, harford, independent, institute, justin, living, macdonald, national, ncil, policy, policyworks, reform, security, social, ssi, steven, support, wid, wo

Photo of Barbara Butz, Justin Harford, and Bryon MacDonald (CareerACCESS team members) at the NCIL 2014 Rally with the White House behind them.

Justin shared that “Our team also received an extremely positive reaction from the youth at the conference, who have been most affected by this issue, and who would most benefit from the solutions provided. As soon as they would learn about what we were suggesting, they would immediately ask how they could help. Clearly, CareerACCESS is an idea whose time has come, and it is only a question of when we will see it implemented.”

Bryon MacDonald, Barbara Butz, Steve Allen and Justin met with NCIL youth and young adults for dinner two nights during the NCIL Conference.  The CareerACCESS program was presented and each of the young adults talked about their challenges building careers on SSI. Each member of this group made a commitment at the NCIL Conference to support CareerACCESS and work on activities to build the CareerACCESS initiative.  Participants included: Justin Harford , Daniel Mellenthin, Cristy, Kay McMillan, Tailor Torando, Ian Kuenzi, Stephanie Woodward, Allie Cannington, and Dara Baldwin. Trisha Ramsey and Dr. Eric Glunt also participated in these meetings.

Photo of the CareerACCESS team meeting with young adults and adults to discuss SSI reform. They are all sitting around a table at a restaurant.

Photo of the CareerACCESS team meeting with young adults and adults to discuss SSI reform. They are all sitting around a table at a restaurant.

Allie Cannington, NCIL Youth Transitions Fellow, shared her thoughts on these developments:

“When reflecting on our time at the NCIL conference, a multitude of thoughts come to mind – some that pertain to policy, others pertain to community building, and all of them encompass a collective commitment to disentangling, the often oppressive system of SSI, and pushing for greater access and equity for young people with disabilities. Our time together reinforced that people’s lives are policy, and through that power of storytelling, the dire need for CareerACCESS was ever so clear. Way too often, youth with disabilities cannot work because of the risk of losing health care, PA services, and their SSI check. This cycle persists, creating an institutional barrier that bars disabled youth on SSI from the skills and experience of work.

I am excited to work on this initiative, and it is of dire importance that we consistently consider who is and isn’t at the table to ensure that the folks leading this fight are young people with disabilities who have been on SSI, specifically young folks of color, LGBTQ, foster care youth, low income, and other multiply marginalized youth with disabilities. We have a long road ahead of us but it is driven by the confidence and commitment of CareerACCESS. “

Daniel Mellenthin had the opportunity to represent the group and CareerACCESS at a meeting on Friday, August 1 with SSA Associate Commissioner David Weaver and Senior Policy Analyst to the Deputy Commissioner, Bob Williams which included members of the Federal Inter-Agency Heads workgroup.  Daniel was able to put a face to the issue of building a career while needed to maintain access to health care and disability-related service.

This meeting ended a busy week for the National Work Group – 20 meetings in five days.

Our thanks to all of the agencies and organizations who took time to learn about CareerACCESS and to help us plan our next steps as we move this initiative forward.