Hearing Denise Veazey, Linda Tucker, and Karen Jackson describe their schedules is exhausting—no matter how much of a capable, Type A person you might consider yourself.
"I'm up at 6:00 AM," Veazey said, "and I'm on the go until 8:00 PM." When she's not on the phone with her customers at Mary Kay Cosmetics, she's working on her first novel, getting her essential hours of exercise, or helping organize Women Against MS events with the Society's Mid South Chapter—all from her wheelchair.
Linda Tucker's work also has her on the phone for much of the day, talking to people all over Tennessee about long-term care insurance. "I'm a living, breathing example of why that's important," she said. The slow progressive course of Tucker's MS has left her quadriplegic.
Karen Jackson works five days a week for a surgeon. Three days she's at the office in Washington, DC, answering calls and consulting with the doctor; two days she's at home in Fort Washington, Maryland, where she can work as her MS fatigue allows.
While all three of these women are special, they're far from unique. People with disabilities—including many with MS—are finding ways to keep working, or start working again, by telecommuting, or doing "telework." Technology, whether it's the Internet or an old-fashioned telephone, helps create the most accessible office of all.
A "reasonable accommodation"
Telecommuting is recognized as a possible "reasonable accommodation" under the Americans with Disabilities Act (ADA). The federal government encourages it for people with disabilities, most recently through its "New Freedom Initiative." Still, getting started isn't as simple as it sounds.
What is often most successful is persuading your current employer to offer a schedule like the one Karen Jackson has: part on site, part from home.
"Most employers will allow a person to work at home at least one day a week—especially if the person has already demonstrated themselves as a valued employee," said Steve Nissen, director of Operation Job Match at the Society's National Capital Chapter.
Nissen, who directed a special telework initiative from 1997-2002, has found that some fields are more conducive to working from home than others: "Web design, computer programming, college and university counseling, writing, editing, and even teaching at the college level, where the prep work can be done at home, are all acceptable choices."
"We're moving rapidly toward a more flexible workplace for all employees," said Jane Anderson of the Midwest Institute for Telecommuting Education (MITE) in Minneapolis, Minnesota.
The bridge to the right job
Operation Job Match and MITE both work with employers to help create placement options. For example, Nissen found work for former floor nurses, whose MS-related fatigue made those jobs impossible, with hospitals that needed help processing radiology reports. Anderson's agency worked with the United Way of Minnesota to develop its "First Call for Help" hotline. All calls are answered by people with disabilities from their own homes.
Equipping the home office
Linda Tucker adapted her home to make telework possible. It's often costly: A home office probably needs an extra phone line or broadband Internet service, as well as office chairs that will sustain a workday, a hands-free telephone, and other aids. Steve Nissen often negotiates with employers to provide the right environment. State vocational rehab agencies can often provide funds and assistance. The U.S. Office of Personnel Management's Web site, http://www.telework.gov/, houses a wealth of information, including telework resources and laws pertaining to working from home.
For Linda Tucker, a former girls' basketball and softball coach, the bridge was Jeanne Brice, director of Programs at the Society's Mid South Chapter. Brice noticed Tucker's "strong voice and winning personality" and put her in touch with Gail Lesby, a local insurance broker who was looking for a friendly, outgoing person to help her.
Now, Tucker helps keep Lesby busy by setting appointments for Lesby's sales calls. Tucker makes 20 to 30 calls a day, depending on her energy level. At her desk is a holder that puts a mouth stick and a cell phone within her reach. She uses the stick to dial, then speaks the results to her computer: voice-recognition software enables her to update the database. Tucker's personal aide, Princess Rhae, types any extra notes, and faxes the resulting call lists to Lesby. "A fair percentage of the people I talk to become clients," Tucker said.
Cutting out the commute
In late 2003 Karen Jackson was going through some major transitions. Coaching had become too fatiguing and Jackson realized that she had to make a change. A surgeon she knew from her athletic work needed some help. Today, Karen takes dictation, schedules surgeries, and makes sure each procedure is "pre-authorized" by the patient's insurance. Her experience negotiating with insurance companies on her own behalf, she said, "certainly didn't hurt."
On Thursdays and Fridays, when Jackson works from home, she doesn't have the fatiguing effect of a commute in the nation's capital. "I leave my office at 5:00 PM and sit in traffic. At home, I'm often still at the computer at 7:30 PM and I get a lot more done."
"This increased productivity is quite common among teleworkers with MS," said Kim Cordingly, of the national Job Accommodation Network (JAN). Cordingly is currently studying women with MS in "alternative employment" for her doctoral dissertation. "These women can be so much more productive if they eliminate that commute," she said.
Start slowly and carefully
Is telework right for you? Cordingly and Nissen both emphasize a careful start. You can go directly to agencies like JAN (800-526-7234, http://www.jan.wvu.edu/), or your local and state employment and vocational rehabilitation agencies. "But you can't make an immediate switch," Nissen said. "You need to look at yourself and see what you have to offer, not just what you need."
What not to do, both agree, is to jump on any random offer that promises riches for at-home work. Many are scams. They exploit workers, often using them and their computers to send borderline-illegal bulk e-mail (also known as "spam").
How will you know?
"Just. Be. Informed," Nissen emphasized. "If an employer wants any money up front, say no. Make sure you're on the payroll of an actual company." Check with the national Better Business Bureau, www.bbb.org, to make sure. And remember, if an offer sounds too good to be true, it probably is.
Telework and benefits
Denise Veazey, the Mary Kay associate, is acutely aware of the need for benefits planning. Veazey was once a specialist in private disability insurance before she started having paresthesia in her arms, and was diagnosed with progressive MS.
Veazey moved back to her hometown in Tennessee, where she knew people and where her benefits, from SSDI and from the private disability insurance she'd purchased, would stretch further. When she wanted to return to work, she knew she would still need Medicare and other support. Mary Kay Cosmetics, with its flexible schedules, allows her to work "about three hours a day" and earn a significant income, without exceeding the maximum allowed under Social Security's "work incentives"—currently $829 a month.
Karen Jackson is also careful to do the same: "I'm actually part time. I don't put in more than 64 hours in a pay period," she said.
Nissen, Anderson, and Cordingly all emphasize the crucial nature of benefits planning. Understanding the eligibility rules is important, even if you're not receiving SSDI or Medicare and are relying on your job's disability insurance or are hoping to start a business. Most private insurance companies take their guidance on eligibility from the Social Security Administration's rules.
The ultimate work at home: starting a business
Some people flourish by becoming self-employed.
Kim Cordingly, who has been at JAN for 20 years, coordinates the agency's Small Business and Self Employment Service (SBSES). SBSES helps with business plans, office equipment needs, and payroll and benefits systems for people embarking on this route. Cordingly has worked with farmers and truck drivers, lawyers and psychologists. She refers her clients to business development groups and vocational rehabilitation agencies that provide very small business loans to people who normally aren't eligible for financing.
"The average start-up loan is about $10,000," said Patti Lind of The Abilities Fund, a national group that provides both capital and assistance to entrepreneurs with disabilities. The fund works with a mosaic of private, federal, and state programs. Many states have "individual development accounts," where every dollar you're able to put into your business is matched by the state. Some businesses are eventually profitable enough to take the place of full-time employment, which is the explicit goal of The Abilities Fund.
The loneliness of the long-distance teleworker
Working at home gives you the flexibility to work when you can, and at your own pace. But it can also be lonely, especially when the only voices you hear come through the telephone. Keeping face-to-face connections with the outside world is important.
Linda Tucker never misses a University of Texas football game and looks forward to her grandchildren's visits, as well as the gatherings where she meets the clients she's found for her friend and employer. Still, she allowed that "it's hard some days."
Karen Jackson, who said she sometimes feels she is "too attached to being home," thinks her on-off commute schedule gives her just enough of other people to keep her sane, especially since her husband travels a lot for work.
Denise Veazey keeps herself busy in addition to her job: She participates in Women Against MS events; volunteers at a local hospital and the Boys & Girls Clubs; and meets regularly with a writers' group.