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Published in 2017
Peter knew something was wrong when he saw the worried expression on his coworker's face. "I think you’d better get that checked out," she said, as she looked down at his ankle, failing to disguise her alarm. He had been watching the desktop screen in front of them while absently tying his shoe. When he followed her gaze to where the leg of his pants receded, he realized that his ankle was so swollen, it spilled over the top of his shoe.
"The swelling seemed to come out of nowhere," he recalls. "Both legs had swollen to the size of small tree trunks! They felt heavy and foreign. It was bizarre… and really scary."
It was another late night at the office, where Peter worked as an information technology (IT) specialist for a sales operation. For 3 years, he had been known for remaining level-headed in the middle of chaos. But that night, in the winter of 2003, he says, "I was the one freaking out."
Peter immediately saw his doctor and after many tests, was diagnosed with End Stage Renal Disease (ESRD). His kidneys were no longer functioning well enough to meet the needs of daily life. Peter had a family history of Polycystic Kidney Disease (PKD), which impairs kidney function and eventually causes renal failure. He was placed on a waiting list for a transplant, and began dialysis treatment. It was the start of a decade-long struggle with health issues that sapped his energy and threatened his life.
Determined to continue working, Peter and his employer arranged a reasonable accommodation, changing his schedule around to make time for treatment. His responsibilities at work remained the same, but the accommodation allowed for more flexibility. The grueling schedule often meant working through the night, going to the hospital for dialysis, and then returning to telework from home. Despite the stress, Peter points out that work helped him feel grounded. "I was able to not think too much about what I was going through," he reflects. "Dialysis is a bummer, but I got to leave the hospital …and go back to work." That is exactly what he did for the next 3 years.
American Job CentersAmerican Job Centers (AJC), formerly known as One-Stop Centers, provide a full range of assistance to job seekers under one roof. Jobseekers can find a variety of job-search services through an AJC, including:
Many AJCs participate in the Ticket program as Workforce ENs and provide employment services for people with disabilities, including training and special programs for young adults and veterans. You can find AJCs who are a part of the Ticket program using the Find Help tool and searching by your ZIP Code. |
In 2006, Peter became a husband and step-father. "So many wonderful and challenging events came together at once," he recalls. "…and I learned to take one step at a time." He was determined to stay employed for as long as possible to establish a home for his family. But a year later, Peter needed to have both kidneys removed in an emergency operation that required a lengthy recovery. The requirements of managing kidney disease derailed his ability to work, and Peter had no choice but to focus solely on taking care of his health.
He began receiving Social Security Disability Insurance (SSDI) and living according to doctors' orders. Even though the road back to improved health was long and littered with set-backs, he expresses gratitude for the time he could devote to healing.
For the next 5 years, Peter cared for his health, his family and his home and by 2013, the event he had been waiting for finally happened. "My turn was up for a kidney transplant. They found a match!"
The transplant was a success, and Peter remembers feeling different almost immediately. "I was no longer battling fatigue all of the time. I felt like a new person. After the transplant, I was ready to get out and start the next chapter of my life," he says. "It was incredible!"
As Peter's health quickly improved, he began to feel restless. "I wanted to contribute, earn money and connect with people again," he says. "My wife was working and the kids were out of the house. I began to feel isolated and had an itch to be at work."
While Peter's desire to return to work was clear, his belief that he could actually do it was murkier. "I wanted to go back to the field I knew and loved. But I knew my technical skills were out of date," he says. "I didn't think anyone would hire me."
He was also concerned about losing the benefits his family relied on – particularly his Medicare. He worried about what would happen if health complications became a problem and interfered with work again. Peter knew he needed help, but was uncertain about where to turn.
At the end of 2013, Peter's wife stopped into their local American Job Center (AJC). There she learned about an employment support program that could help Peter transition back into the workforce.
Increased confidence with Work IncentivesPeter was able to test his ability to work during a 9-month Trial Work Period (TWP), while still receiving benefits payments. After the TWP ends, a 36-month Extended Period of Eligibility (EPE) begins. During the EPE, most people with a disabling impairment receive benefits for months in which they earn less than Substantial Gainful Activity (SGA). For 2017, Social Security defines SGA as $1,170 for a person who is not blind. Peter was particularly relieved when he learned about a Work Incentive called Continuation of Medicare Coverage. SSDI recipients who work continue to receive Medicare benefits for at least 7 years and 9 months after completing the TWP. And if Peter needed to stop working within 5 years because of his disability, he learned that Expedited Reinstatement (EXR) may help him re-start his benefits without a new application. He felt more at ease returning to work knowing he would have time to adjust to the job without losing his benefits. Learn more about different Work Incentives by reading Social Security’s Red Book at www.ssa.gov/redbook. You can also register for a free Work Incentives Seminar Event (WISE) or talk with a Benefits Counselor to understand how Work Incentives apply to you. |
Peter learned that through Social Security’s Ticket to Work (Ticket) Program, State Vocational Rehabilitation (VR) agencies and service providers known as Employment Networks (EN) offer a range of free support services to help recipients of Social Security disability benefits (ages 18 through 64) prepare for, find, or maintain employment. Some providers serve people with a specific type of disability; others offer certain types of services. The Ticket Program is free, voluntary, and set up to help people become less reliant on their Social Security benefit payments while they gain financial independence through work.
Peter found the assistance he needed when he followed up with A Ticket to Success, a Tulare County-based EN. With help from his EN, Peter learned about Social Security rules called Work Incentives.
Work Incentives make it easier for adults with disabilities to explore work and still receive Medicaid or Medicare and benefit payments from Social Security. He felt at ease knowing he was not going to suddenly lose his coverage when he returned to work. He would have time to determine how full-time employment would work out for him. Staff at A Ticket to Success put him at ease, and he decided to "get back out there."
Together Peter and his EN developed an Individual Work Plan (IWP), a roadmap that would help him reach his employment goals. They took a fresh look at the job market in the field of IT and revamped his resume.
Peter's EN helped Peter assess the type of job accommodations he needed. They sent him job leads, practiced interviewing skills, and supported him throughout the transition back to work. "They helped me restore confidence in my prospects," he says. "I felt supported and that made all the difference."
 "I'm someone who doesn't quit," he continues. "But re-entering the workforce is tough and you need someone there to help you do it. It's good to know that there are supports [through Ticket to Work] we can rely on when the going gets tough…"
By 2014, Peter found work helping a local organization with their systems administration. He describes this tentative return to IT as challenging and exhilarating at once. "It was a struggle at first," he recalls. "But sooner than I expected, I realized, 'I can do this' and… that felt great!"
Peter is a full-time employee, doing what he loves and using his skills again. CSET, his employer, is a non-profit agency that was established to fight America's war on poverty.
"I turned a hobby into a career," he reflects. "As a kid I liked to tinker, build circuits and figure out how mechanical things work. Now I get paid to help people solve their tech problems. I feel lucky that I was able to get a transplant and move forward. My work gives me [a sense of] purpose. It is a privilege to do well while doing good."
Ticket to Work and Work Incentives helped Peter find his path to a better future.
Find yours! To learn more contact the Ticket to Work Help Line at 1-866-968-7842 or 1-866-833-2967 (TTY). Ask a representative to send you a list of service providers, or find providers on your own with the Ticket to Work Find Help tool.