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This is the fourth post in a series entitled “Issues I face as a working adult with a disability.” Read the last post: Transportation Issues
It was hard for me to be certified for disability assistance through SSI [Social Security Income]. The application was very difficult to complete and required lots of documentation, which I provided, but still it was denied. My parents were helpful and what we learned is that almost everyone with a disability like mine [one that is not a clear cut physical challenge but something more subtle and harder to quantify] receives a denial. But with support from my family, physician and neurological testing we were able to appeal the original decision, and eventually I was awarded SSI support. This has proven to be very important and helpful to me; more than the monthly stipend is what comes with SSI- health insurance, prescription coverage, vocational support, and other benefits. After getting SSI I was also able to apply for supports from the State of Massachusetts and qualified for their transportation program [THE RIDE] as well as food stamps from the Dept. of Transitional Assistance.
Each of these programs requires constant documentation and reporting. SSI is the hardest one. Because I have a part-time job where I am paid hourly, my salary fluctuates each month. I am lucky that my parents help me because we are required to report the amount I earn every month which determines the amount of benefits paid by SSI. Even though we do this without fail, SSI almost always either over-pays or under-pays my benefits. Each month I get multiple mailings from SSI informing me of my benefits and almost every month the first mailing isn’t accurate and we receive a corrected mailing within a few days or weeks. It is really hard to figure out how much money I will have each month to pay my bills and really hard to make and stick to a budget. In spite of the monthly corrections, every six months or so I get notification that SSI has determined I have received too much money and that they are going to reduce payments to recover the amount owed. We never really know what to expect. Each year I need to meet with an SSI agent to review my account and verify my eligibility.
Working with Mass. Rehab turned out to be very helpful, although also very hard. For the first 5 years I had a different vocational counselor and I was sent to a different vocational agency every year. None of them really understood what kind of job I would be good at and nothing seemed to work. I repeated lots of testing and workshops over and over again before I was lucky enough to be transferred to Jewish Vocational Services (JVS). In 2011, after only a few months with JVS they recommended I apply to the new Transitions to Work program; a partnership between the Ruderman Family Foundation, JVS and CJP. I was accepted into the very first group of interns at Newbridge on the Charles [NBOC] where I learned work ethics and kitchen skills and at the end of the internship, I was hired by Newbridge. What made this program work for me were the classroom lessons taught by JVS staff and the hands-on training at NBOC.
What made it possible for me to not only keep the job at NBOC, but to earn positive work review, increased hours, and a steady paycheck was the on-site job coaching by JVS staff and the multi-agency commitment to my success as well as to the success of the program. A major highlight had to be our graduation ceremony in February, 2012 where I met and talked with former Massachusetts Governor Deval Patrick and gave him a tour of my job area.
All of the social service supports for which I have been able to qualify combined together allow me to live outside my parent’s home and to be as independent as possible.