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Giving Kids a Head Start: Vilmarie Sostre-Lamb’s Story
Published in 2014
Vilmarie Sostre-Lamb remembers the day that Multiple Sclerosis (MS) came into her life with no warning and no indication of leaving. The energetic 26-year-old worked in retail and spent a lot of time on her feet. So when she experienced sudden fatigue, numbness and discomfort in her legs one morning, she thought she just needed some rest. But the strange feelings came back. Blurred vision and vertigo were added to the litany of unpredictable symptoms that were part of the intermittent attacks she experienced. It felt like her body was hit by a storm system. In fact, Vilmarie was dealing with a neurological storm; one that had been forming for years. She had no idea what was happening to her. After consulting several doctors, she learned about the two letters that would change her life.
MS: A Persistent Presence
MS is a disease of the central nervous system that interrupts the flow of information between the brain and the body. Its cause is unknown and there is no cure. Vilmarie did not know whether her symptoms would be limited to numbness and fatigue, or progress to a point where she would lose the use of her limbs, her balance or her vision. She tried not to think about it. But symptoms showed up more frequently, coming and going for no known reason. Unpredictable episodes became persistent, and interfered with work.
In 2003, Vilmarie began receiving Social Security Disability Insurance (SSDI) while she sought treatment. At first, she was grateful to have a chance to focus on managing her condition while she devoted time to caring for her two young children. But in time, Vilmarie began to feel isolated. Episodes became more severe. She suffered permanent damage to her vision, and to her left leg.
“While I was home, I relapsed more frequently,” she recalls. “My emotional state was impacted badly, causing me several depressions.”
Vilmarie’s sense of isolation was not helping. She believed that if she did something to support her mental health, better physical health would more likely follow. “To feel better, I needed to feel useful and productive,” she says. “I knew that going back to work and being professionally engaged could help improve my health overall....”
Vilmarie is a devoted parent with a unique understanding of what it takes to help children learn. Before her diagnosis, she wanted to become a teacher. She earned a bachelor’s degree in education, had the skills to make this dream come true, and was ready to apply them. But the progressive nature of MS was a real concern. Vilmarie felt as if her body had turned on her. There was no way of knowing how much worse things would get. She worried about the damage to her leg and her vision. Her fears about losing mobility or becoming blind affected her confidence about re-entering the workforce.
While Vilmarie was ready to explore work, she needed help understanding the risks and rewards connected with employment. When she received a letter in the mail from Social Security about the Ticket to Work program, she called the toll-free phone number provided to learn more.
Social Security’s Ticket to Work program supports career development for people with disabilities who are ready for work. Social Security disability beneficiaries age 18 through 64 qualify. Through the Ticket program, service providers known as Employment Networks (ENs) offer a range of free support services to help people prepare for, find, or maintain employment. The program is voluntary, and set up to help people with disabilities progress toward financial independence.
One Stop: An Employment Network and an American Job Center
A Ticket Help Line representative sent Vilmarie information about ENs that could help her make informed decisions about work and navigate a job-hunt. Some ENs serve people with a specific type of disability; others offer certain types of services. ENs that are also American Job Centers (AJCs) offer a broad range of employment support services in a single location. Because a variety of employment needs can be met in one place, AJCs were once known as “One-Stop Career Centers.”
American Job Centers
Service providers and employers around the nation offer job-seekers with disabilities meaningful access to training, support services and employment. These organizations, (with the help of funding from the Employment and Training Administration), make up the US Department of Labor’s Workforce Development System. American Job Centers are part of the Workforce Development System.
American Job Centers (formerly known as One-Stop Career Centers) provide job seekers, with and without disabilities, a variety of tools and services to help them get back to work. Services include training, referrals, career counseling, job listings and other similar employment-related services. Tools, many of which are available on-line, assist job seekers with career exploration, skill assessments (including identifying transferable skills), credential listings, and job openings. Customers can visit a Center in person or connect to the Center’s information through PC or kiosk remote access. Many American Job Centers are also Employment Networks and can accept your Ticket under the Ticket to Work program. You can locate your closest American Job Center at www.servicelocator.org or by visiting www.careeronestop.org.
In 2009, Vilmarie found help when she met with a counselor at Alianza Municipal de Servicios Integrados (AMSI), an EN that is also an AJC near her home in Puerto Rico. AJC services vary, and may include skills assessment, benefits counseling, referral to training, career counseling, job search assistance, and related supports.
Vilmarie’s concerns about benefits and employment lingered.
“I was afraid that if I went back to work, I would lose my Social Security and Medicare benefits,” she says. “I also was uncertain about whether the demands of a full-time teaching job would be compatible with my condition.”
With help from a benefits counselor at her Employment Network, Vilmarie learned about Social Security rules called “Work Incentives.” Work Incentives make it easier for adults with disabilities to explore work and still receive health care and some cash benefits from Social Security. Vilmarie was able to test her ability to work during a nine month “Trial Work Period” (TWP), while still receiving cash benefits. After the TWP ends, a 36-month “Extended Period of Eligibility” (EPE) begins. During the EPE, most people with a disabling impairment get benefits for months in which they earn less than $1,040 (Social Security’s definition of “Substantial Gainful Activity” amount in 2013). Should Vilmarie’s vision deteriorate, she could also be eligible for “Special Rules for Persons who are Blind.” These Work Incentives were put in place to make it easier for people who are blind to enhance their skills and gain work experience while receiving benefits.
Find Benefits Counseling Help
Benefits counselors (also known as benefits advisors) are professionals who can explain how Work Incentives apply to you. Professionals who have completed Social Security-sponsored training that qualifies them to offer benefits counseling are known as “Community Work Incentives Coordinators” (CWICs).
Some ENs, and community-based organizations known as “Work Incentives Planning and Assistance Projects” (WIPA), have CWICs on staff. A CWIC can help you make an informed decision about employment. To find a provider that offers benefits counseling, visit the “Find Help” tool. Use the filtering feature to pinpoint services tailored to you. Select “Work Incentives Counseling” on the services menu to filter your search. Find providers that offer benefits counseling by selecting the check box for "Benefits Counselor on Staff." For help, call the Ticket to Work Help Line at 1-866-968-7842 (V) or 1-866-833-2967 (TTY).
Vilmarie felt at ease knowing she was not going to suddenly lose her health care coverage and SSDI benefits when she returned to work. She would have time to determine whether full-time employment could work for her.
“At Alianza Municipal (AMSI) I received great support,” she said. “They helped me understand how working would affect my disability benefits, helped me sort through information about the labor market, provided job hunting workshops, and referred me to my teaching job through their job referral program! Getting back to work has been a remarkable experience for me and for my family.”
Vilmarie’s EN continues to answer her questions and offer support. AMSI is there to help her communicate with Social Security, stay organized and report earnings regularly. If she needs help, she knows who to call.
A New Beginning
Vilmarie has been teaching for the Head Start Program’s preschool center in Guayama, Puerto Rico for more than four years. She wears many hats in her role, developing curricula, organizing lessons, and preparing students for a successful Kindergarten experience. She is inspired by her work and has enjoyed a lot of growth in her career so far. With higher earnings, Vilmarie has left SSDI behind and says it is nice to no longer rely on a fixed income.
“Returning to work has given me a chance to grow personally and professionally. But the most important impact has been the contribution to my improved health and well-being. Working helped restore my faith in my body and in myself. I will always be grateful to God for the opportunities I have had, thanks to the Social Security Administration and Alianza Municipal de Servicios Integrados. Since I received information about the Ticket to Work program, I walked toward my goals with less fear and reached them!”
With the right support,Vilmarie found her path to a better future. Find yours. To learn more, call the Ticket to Work Help Line at 1-866-968-7842 (V) or 1-866-833-2967 (TTY).