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Place in the Workforce
A Cup of Ambition
by Tamar Asedo Sherman

Could you work if you had training?
transportation? special equipment?

If you had to give up your last job because of MS, if you are looking to enter or re-enter the work force, or even if you are currently employed but worried about the impact of MS on your job—you owe it to yourself to make a call to your state’s vocational rehabilitation program. Under federal law, every state has one. The formal name varies, but “voc rehab” generally offers amazing possibilities. To be eligible, a person must have a physical, mental, emotional, or learning disability that interferes with the ability to work. Invisible problems such as MS-related fatigue or cognitive problems are included in this list.

“Five people sitting in the room can all have MS, but the degree to which MS impacts their ability to work and the services they need are different for each of them,” said Erin Treadwell of California’s Department of Rehabilitation. “We make sure the person’s goals are reasonable and attainable,” she said. In most states, voc rehab staff seek flexible solutions to help people with MS gain or retain employment as full-time, part-time, or self-employed workers.

“We look at a person’s strengths, abilities, and capabilities to achieve whatever is the vocational goal,” said Rita Martin, deputy director of Indiana’s Vocational Rehabilitation Division.

George Knight of Muscatine, Iowa, was referred to his state’s voc rehab service when he applied for federal food stamps to help extend his Social Security Disability benefits. A 43-year-old construction worker who built houses for a living, Knight was diagnosed with MS four years ago, after his sensitivity to heat made him unable to continue working. He also experienced numbness, loss of balance, speech problems, cognitive difficulties, and loss of peripheral vision.

His dream was to open his own woodworking business. “I can build just about anything you can imagine out of wood,” he said. The Iowa voc rehab team helped him write a business plan, and he obtained a $2,500 state grant to buy tools and lumber. Knight signed the papers and set up shop in his garage.

“My pipe dream turned into reality!” he exclaimed. “I don’t have to work for anybody. I work for myself. I couldn’t have done it without them.”

Knight’s home business means he can pace himself and work when he feels up to it—usually early morning before it gets hot and evening after the sun goes down. He continues to get Social Security Disability benefits and, as of 2001, could earn $740 each month, after deducting all his “impairment-related work expenses.” These include the cost of whatever it takes to permit him to work.

Most state voc rehab programs offer job readiness training, job coaching, job placement, mobility training, and assistive technology assessments. For people with MS, counselors try to find jobs that are indoors, can be performed sitting down, and are part-time or have flexible hours to accommodate fatigue problems. Most states encourage education or retraining within their own systems, at two-year and four-year state institutions. Many provide short-term computer training programs.

“We provide anything that helps someone go to work or maintain employment,” said Cecile Bentley, assistant administrator for field operations at Oregon’s Vocational Rehabilitation Division. Oregon takes a particularly aggressive approach through its Employed Persons with Disabilities program, or EPD. “The risk of losing Medicaid benefits is one of the major barriers to employment,” said Scott Lay, EPD’s coordinator. “People shouldn’t have to choose between employment and health insurance.” In Oregon, they don’t have to.

The state amended its Medicaid plan to allow people to have earnings that don’t count against them for Medicaid eligibility, after the “trial work period” is over. Federal law now allows every state to do this, although they are not mandated to. The benefits of an aggressive program are very clear to Scott Lay.

Sue Kuenzi, age 35, of Monmouth, Oregon, was working on a master’s degree in rehabilitation counseling when she was diagnosed with MS. “I never anticipated that I would need voc rehab services,” she said. But when her health insurance wouldn’t cover disease-modifying treatment, Oregon’s EPD advocated for her to get Medicaid, which now pays for her Copaxone. To enable her to keep her job at a community college, EPD outfitted her with a scooter to get around campus, hand-controls for her van, and a lift to get the scooter into the van.

“If we didn’t provide this program, clients like Sue Kuenzi wouldn’t be working, and they’d just be in the system,” said Lay. “Most would be on Medicaid anyway. This program allows the people to work and pay taxes. They contribute to the economy. To us, it’s a no-brainer. Everyone benefits.” So, in Oregon, a person in this program can retain Medicaid coverage no matter how much she or he earns.

Even so, Gary Herron, 49, of Albany, Oregon, hopes to earn enough money through his new business to no longer need any disability benefits. A wildlife artist who created wood sculptures and paintings for 25 years, he had to stop sculpting because of weakness caused by MS.

Oregon’s voc rehab provided him with a voice-activated computer and scanner to make prints of his paintings. He also received a grant to buy art supplies. Perhaps more valuable than the financial boost was the emotional one. Herron now has the interest and confidence to start working again, and he’s currently trying to get a van with hand controls and a lift so he can drive to different sites to display his work. He’s also writing a book on how to make wood sculptures, a book about living with MS, and his autobiography.

Meeting with a voc rehab counselor is the first step to determining how the service can help you. Some people need home modifications to be able to work. These could include wider doorways and a ramp for wheelchair access into and out of the home, a chair lift to get to a home office upstairs, even converting a tub into a roll-in shower so a wheelchair user can stay at home where the business is. In New York State, home modifications can be provided to homemakers with MS who don’t do any other work, according to Lisa K. Roller, a counselor for the program.

Other job-related needs might include personal attendant services, on-the-job training, help with reading or note-taking, and transportation to and from training programs. Most states also offer incentives to employers who hire people with disabilities.

Steve Shivers, the commissioner of Alabama’s Department of Vocational Rehabilitation Services, believes his program is one of Alabama’s best economic investments. “For every $1 spent, $20 will be returned to the state’s economy through our clients’ employment,” he said.

The federal Vocational Rehabilitation Act of 1973 requires every state to offer such services. While not all programs are the same, you won’t know the possible ways your state can help you unless you ask. Look in the governmental offices section of your phone book, or type your state’s name and the words “vocational rehabilitation” into any search engine on the Internet.

Do it today!

 
     
 
For additional information
MS and Employment
 
 
  Tamar Asedo Sherman is a working reporter, thanks in part to help from VESID, the voc rehab service of New York State. She received driving lessons, hand controls for her van, and an architect drew home modification plans that included wider doorways, a roll-in shower, and a ramp connecting her garage to her house.  
     
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