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Published in 2017
Shileta listened intently to the distressed high school student in her office who described a "rudderless" feeling hanging over her like a cloud. The student was anxious about not knowing what to do after graduation. Shileta knew she could help.
As a staff member of the DC Center for Independent Living, Shileta spends much of her time guiding youth with disabilities through self-discovery and life planning. She knows first-hand what it's like to navigate adolescence with a disability. Growing up with cerebral palsy, she struggled with how to achieve the future she envisioned.
As a 28-year-old, Shileta appreciates the importance of cultivating a strong sense of identity early on. She did not grow up defined by her disability. She is grateful for the many caring people in her life who stressed the importance of education and encouraged her to build on her strengths. But she also remembers wishing she had other people with disabilities as role models.
Cerebral palsy (CP) is a group of disorders that affect a person's ability to move, to control their muscles, and to maintain their balance and posture. CP is the most common motor disability in childhood. "Cerebral" means having to do with the brain. "Palsy" means weakness or problems using muscles. CP is caused by abnormal brain development or damage to the developing brain.
The symptoms of CP vary from person to person and change over time. A person with severe CP might need special equipment to walk, or might not walk at all. They might need lifelong assistance. A person with mild CP might walk awkwardly but not need special help.
For more information and resources, visit United Cerebral Palsy.
"I had to figure things out on my own a lot. I was afraid at times, not knowing how to navigate certain situations at school ... anticipating what life would be like living on my own, planning what type of work to pursue. I remember being anxious about things like getting around using public transportation. Many people who grow up with a disability face these obstacles. Having someone who could relate to my situation and offer guidance would have been helpful. Some part of me always knew I wanted to help fill that void for other young people who were experiencing uncertainty."
"Ticket to Work has improved my quality of life. I'm able to do things I wouldn’t have been able to do if I were relying on SSI. This is my paycheck! I earned it ... and that leaves any person with a sense of pride, motivated to put their best foot forward ... to achieve more."
Shileta found the role models she was looking for in 2007 when a friend suggested she check out Disability Mentoring Day (DMD). DMD gives students and job seekers with disabilities hands-on career exposure and access to mentoring relationships. It's coordinated by the American Association of People with Disabilities (AAPD) and has grown from a handful of participants into an international effort. Each mentee is paired with a professional to learn what it means to work in their field of interest.
Shileta had been receiving Supplemental Security Income (SSI) since she was a girl. She was determined to earn enough money to no longer rely on a fixed income. But she needed support as she prepared to live and work independently. So she spent time talking with people at the community organizations she learned about from her mentors and friends. Two of these organizations would bring her goals within reach and move her toward the independent life she was planning.
Like State Vocational Rehabilitation (VR) agencies, Ticket to Work Program Employment Networks (EN) offer support services that help you prepare for and find work. Unlike most State VR agencies, ENs also provide job retention services that can help you to stay employed or advance in your career.
For example, after you have found work, an EN that offers "post-employment support services" may help you:
Some ENs serve people with a specific type of disability, while others offer certain types of services. Use the Find Help tool to connect with providers that offer the services you need. You can also find help by calling the Ticket to Work Help Line listed at the end of this feature.
In 2010, Shileta connected with Full Circle Employment Solutions, a service provider dedicated to helping job seekers with disabilities become financially independent. Hundreds of authorized providers like Full Circle offer free employment support services through Social Security's Ticket to Work program. The Ticket Program supports career development for people ages 18 through 64 who receive Social Security Disability Insurance (SSDI) or SSI and want to work. Ticket to Work Program service providers known as Employment Networks (EN) offer a range of services. SSI and SSDI recipients can talk with as many ENs as they choose until they find the right fit. Choosing the Right Employment Network for You can help with this decision.
While she prepared for work, Shileta was concerned about losing her benefits. So the counselor at Full Circle Employment Solutions began by helping her learn about Social Security rules called Work Incentives. Work Incentives make it easier for adults with disabilities to improve their job skills and gain work experience while receiving Medicaid or Medicare and cash benefits from Social Security.
Benefits Counselors are professionals who can explain how employment can affect your Social Security benefits. Some professionals who have completed Social Security-sponsored training that qualifies them to offer benefits counseling are known as "Community Work Incentives Coordinators" (or CWICs). Community based organizations known as "Work Incentives Planning and Assistance projects" (WIPA) have CWICs on staff that can help you make informed decisions about employment. Some ENs also have CWICs on staff.
To find a provider that offers benefits counseling, you can call the Ticket to Work Help Line number at the end of this story or use the online Ticket to Work Find Help tool. Use the Advanced Search feature to pinpoint services tailored to you. Select "Work Incentives Counseling" on the services menu to begin your search. All WIPA projects offer benefits counseling, but not all ENs have benefits advisors on staff. Those that do will have an EN Profile that indicates there is a "benefits advisor on staff."
Shileta was relieved to learn she could keep her Medicaid coverage while she worked even if her earnings were too high for an SSI cash payment. This Work Incentive, known as Medicaid While Working (or 1619b), allowed Shileta to find work without worrying about losing her health coverage. She could work while deciding if full-time employment was right for her.
There are many different Work Incentives available. Because each person's circumstances differ, job seekers are encouraged to talk to a Benefits Counselor who can help them understand how employment will affect their benefits (see sidebar on page 3).
Staff at Full Circle also worked with Shileta to develop an Individual Work Plan, a road map that would help her reach her employment goals. They discussed reasonable accommodations, any adjustments to her work environment she might need to perform certain job functions. Shileta's EN educated her about her Ticket program responsibilities and helped her with Social Security correspondence. Had she needed it, her EN would have helped with her job search. But Shileta found work on her own at the end of 2011 and turned her job offer into employment success.
"... the next generation of young people with disabilities is growing up. They worry about the same things I worried about. They will have support from people who were there before them, and it is a privilege to be among the mentors who can offer them guidance."
As Shileta's career advances, she will face new questions and challenges. Her EN will continue to answer her questions about benefits and work. Shileta is glad to have Full Circle staff by her side along the road to independence. Independent living is not the same thing as flying solo.
Shileta now works for The DC Center for Independent Living (DCCIL). There are 400 Centers for Independent Living around the country, helping people with disabilities live independently in their homes and communities. Independent living allows people with disabilities to live with dignity and appropriate support in their own homes, to fully participate in their communities, and to make decisions about their own lives.
Shileta found the DCCIL while exploring support services in 2011. She felt immediately at home in an organization with a philosophy that matched her passion. Executives at DCCIL met with her and quickly realized she had skills that could support their organization. By 2012, Shileta started work as an Independent Living Special Assistant, conducting community outreach and helping young people meet their professional goals. Finding work also allowed her to trade her SSI check for a larger paycheck.
Shileta's independent living comfort zone has also expanded. She is working on a master's degree while she helps young people find their way to an independent and fulfilling life and empowers the next generation.
The Ticket to Work Program helped Shileta find her path to a better future.
Find yours! To learn more, visit www.ssa.gov/work and contact the Ticket to Work Help Line at 1-866-968-7842 or 1-866-833-2967 (TTY), Monday through Friday, 8:00 a.m. to 8:00 p.m. ET.
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.
Social Security's Ticket to Work Program supports career development for people ages 18 through 64 who receive Social Security disability benefits (SSI or SSDI) and want to work. The Ticket Program is free and voluntary. It helps people with disabilities move toward financial independence and connects them with the services and support they need to succeed in the workforce.
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