Life with MS

“This is great,” said Joan from my MS support group. “My life is so much better. Some days, I don’t feel like I’m sick at all.” What made such a difference in Joan’s life and health? Hint: it wasn’t a drug. It was money. Joan recently started receiving Social Security Disability Insurance.
 
“Receiving disability transformed my life in four ways,” Richard, another MS friend, told me. “I don’t have to use up all my energy to get through a work day. I don’t have to struggle to appear less disabled than I am, or put up with harassment from supervisors. And most important, I don’t have to worry about losing my income and my home. I have less stress and more time to devote to keeping my body in the best possible health.”
 
Problems with disability
 
People sometimes see going on disability as the beginning of the end. You’re out of the work force, in danger of becoming isolated, without a reason for living. But going on long-term disability can be a key step in recovering health and making your life work. “You don’t go on disability to die,” as one man told me, “You go on disability to heal.”
 
Others may feel guilty for taking government disability, as if they are “leeching on the government,” according to MS Society Direct Services Coordinator Rosemarie Johnson. She tells such people, “As long as you’ve worked, F.I.C.A. has taken money out of your paycheck. This is your money you’re getting back.”
 
Another problem is the actual application process. You have to fill out forms describing your condition in the worst possible terms. This is painful when you’ve worked hard to maximize your abilities and live your life as fully as you can. “At first, I was anxious because I felt I was exaggerating symptoms,” Joan told me. “Then it was very depressing when I realized I wasn’t.”
 
What does “disabled” mean?
 
There is really only one criterion for disability: can you do substantial paid work? “Substantial” means earning $800 a month. And it doesn’t have to be work you know, or work that is available in your community. Ability to do any kind of full-time paid work at all can disqualify you. (One major exception: if you work for yourself, the Social Security Administration looks at your net income – what you report to the IRS – not at your gross.)
 
There are five ways people with MS can prove disability. These include substantial limitation of vision, cognitive problems, fatigue, or major disability of two extremities. SSA can also combine these factors, evaluated on what they call a “grid” of over-all disability.
 
You’ll need evidence to get disability. Rosemarie Johnson says, “You have to be proactive. Keep a journal and write about your symptoms and how they limit your activity. See your doctors regularly. That way, if you do need to apply for disability, you’ll have solid documentation.”
 
A detailed letter from your doctor testifying to fatigue or cognitive problems is powerful evidence of disability. So your doctors should ask about fatigue and cognition at each appointment, or you should bring it up. It’s helpful to get a neuro-psychological evaluation every couple of years and again before applying for disability. Letters from family, friends or anyone who has observed your daily activities can also document your disability.
 
The application process
 
The application process is emotionally draining, so it’s a good idea to have a friend or family member help with filling out forms. You should fill out the forms truthfully, but report what it’s like on a bad day, not on your best day. SSA physicians evaluate the application. They sometimes send applicants to their own neurologist or psychologist for further evaluation.
 
About two-thirds of applicants with MS are turned down the first time they apply. Rejection is frustrating, but most people should appeal. The first appeal is a paper review of the documentation. This is followed by an appeal hearing before an administrative law judge. If turned down again, the case can go to the SSA Appeals Council, and finally, to civil court. About 75 percent of applicants with MS eventually get their money, retroactive to five months after the date of disability.
 
Life on disability
 
SSDI is not a ticket to the high life. A person who was making $40,000 to $50,000 per year will receive about $1250 to $1350 per month. There is a built-in cost of living increase. For people who didn’t have enough work history to qualify for SSDI, there is Supplemental Security Income to add a bit more. SSDI confers Medicare coverage 29 months after the date of disability.
 
Remember that SSDI is “long-term disability,” not “permanent disability.” It may turn out to be permanent, but SSA’s Ticket to Work program provides rehabilitation and vocational services. Ticket to Work can help you get back to work or to start a business. It maintains Medicare after starting back to work, and a five-year grace period during which applicants can get their disability reinstated if their job doesn’t work out.
 
Applying for long-term disability is not a failure or a catastrophe. It’s like a walker or a wheelchair, a form of assistance that can enable you to maintain the best possible quality of life. People on disability insurance can and do contribute a great deal to society as volunteers, caregivers, families, neighbors, and friends. Applying for SSDI is not a decision to take lightly, but it is not the end of your useful life. It can often be the beginning of a better, and in many ways a healthier, existence.
 
Learn more at www.ssa.gov or call (800) 772-1213. When you call, have your social security number on hand.
 
(Last reviewed 7/2009)