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Illustration by Mike Morgan
Illustration by Mike Morgan

Qualifying for benefits

New rules make proving a disability more straightforward but applying for Social Security Disability Insurance more involved.

by Lori De Milto

Changes to the Social Security Disability Insurance (SSDI) guidelines make it easier for people to show how multiple sclerosis affects their ability to work. But the changes also make applying for SSDI or Supplemental Security Income (SSI) benefits more complicated.

Effective as of September 2016, these are the first changes to the criteria for neurological disorders since 1985.

Carlos Healey, diagnosed in 2001, with his healthcare team.

“The Social Security Administration [SSA] was aware that the criteria weren’t working optimally, and has given people more opportunity to show the ways in which MS is impacting their ability to work in a full-time job,” says Rosalind Kalb, PhD, a clinical psychologist and consultant to the National MS Society. Kalb is also the author of the Society’s guidebook, “Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers.”

3 ways to show the impact of MS
Applicants must meet specific criteria in the SSA’s official MS listing, which is a list of impairments, to be considered disabled. Many symptoms of MS that prevent people from working are invisible and unpredictable, and the revised criteria show that the SSA understands this. People with MS now can describe three types of symptoms—physical, special senses (including vision), and speech and cognitive—in any combination to qualify for disability.

Some people with MS will qualify for disability based only on physical symptoms, Kalb says. “However, most people will have milder symptoms with a combination of some physical, visual, cognitive and/or mood issues that can affect job performance,” she says. Difficulty walking, maintaining balance or doing other physical activities can be severe enough to qualify for disability, for example, but needing a cane to walk isn’t enough by itself.

One common symptom, fatigue, is no longer a primary consideration in disability applications, says Jamie R. Hall, a lawyer who specializes in SSDI cases and works with people with MS. “Fatigue has been minimized,” Hall says. “It still qualifies you for disability under the listings, but now you have to dig through sub-definitions to get to it.”

Fatigue is now covered in a more general way under the items listed for MS rather than being evaluated through a separate test. The SSA evaluates fatigue along with other signs and symptoms of MS when determining a person’s ability to stand up, balance, walk or move, as well as any limitations in mental functioning. The SSA considers the intensity and persistence of fatigue and how it affects the ability to function.

Other healthcare providers can help
Another key change is that the SSA no longer considers the neurologist to be the most important source of medical information by default and may give equal consideration to what are deemed “Acceptable Medical Sources.” These sources include other physicians, psychologists, optometrists, speech-language pathologists, physician assistants and advanced practice nurses.

Now your other healthcare providers, such as your general physician and optometrist, can help support your application in addition to your neurologist, says lawyer Jamie R. Hall. Photo courtesy of Jamie Hall

“This is really good for people with MS,” says Hall, because neurologists often see patients less often and can be less familiar with their MS symptoms than other healthcare providers. But it also means that the person with MS will have to coordinate the disability application with all those different healthcare providers. Hall recommends working with the healthcare providers who care for your most important issues and know you best.

The right information in the right way
The person with MS, as well as his or her healthcare providers, must provide the right information in the right way to support a disability application. “Healthcare providers need to carefully document disease worsening and its impact on work. They need to document in the chart the change over time,” Kalb says. The person with MS must track any symptoms and work-related challenges, and tell healthcare providers about them. The Society’s guidebook provides a worksheet for doing this.

For instance, the worksheet explains how to describe the impact of fatigue and other physical symptoms on work and includes examples.

Start talking about disability as soon as you become concerned about your ability to work, say both Kalb and Hall. This gives you and your healthcare providers time to document your problems and build your case. Make sure that your neurologist agrees that you should apply for disability. “If your neurologist doesn’t support you, it can kill your claim,” Hall says.

SSA decision-makers aren’t medical professionals, so referring to the specific listing and using language similar to the listing makes it easier for them to approve your application. The Society’s guidebook provides a disability evaluation checklist to help healthcare providers document information correctly based on the SSA listing of MS impairments.

Check your medical records from your key healthcare providers to make sure they’re properly documenting your MS and its impact on your work. If a healthcare provider isn’t doing this, talk to him or her about making the necessary changes. Hall says that healthcare providers who already take good notes won’t be affected much by the changes.

Get help with your application
Applying for SSDI is complicated. “If you can’t fill out the application yourself, engage somebody to help. This can be a friend or relative, or you can pay a professional,” Kalb says.

A lawyer with experience in disability and working with people with MS can serve as your quarterback. “[Before] you’re about to leave work, hire an attorney. We can help guide you out of work in a way that will help your case going forward,” says Hall. The lawyer can identify what to focus on, and ensure that your healthcare providers document your case appropriately.

You only pay legal fees if the SSA awards you disability benefits. The fee is usually 25 percent of your disability payment for the time between the date you left work and the date you were approved. It’s never more than $6,000. For help finding a lawyer with experience in MS, contact a Society MS Navigator. Some neurologists also might be able to refer you to a lawyer.

Dealing with an SSA disability examiner or a denied claim
If the SSA requires you to undergo an examination by one of its disability examiners as part of your application, “it’s likely the person won’t know much about MS,” Hall says. Find out what type of doctor you will be seeing, and document how long he or she spends with you. Testimony from a primary care physician who spends 10 minutes with you is much less meaningful than testimony from a neurologist who examines you for an hour.

Hire a lawyer if the SSA denies your application, Hall recommends. A denied claim often happens because people don’t provide the right information in the right way or if the SSA makes a mistake. “They’re not bad people [at the SSA], but it’s tough to get a real feel for a person based on paper,” Hall says. “If you think your case is good enough to file a claim, it’s good enough to file an appeal.”

Experts don’t know yet whether the changes will make more people with MS eligible for disability benefits. Kalb says more people might be eligible if they know how to use the guidelines.

Hall says that the changes won’t have much impact on people over the age of 50 but that the new provisions could make it harder for younger people to qualify for disability. The SSA uses different standards for evaluating younger and older people. People younger than 50 must prove that they cannot work full-time in any type of job, while older people only have to prove that they can’t do the type of work they did in the past 15 years or perform alternative light-duty work.

“The SSA isn’t trying to deny people who deserve disability [benefits], but they need all of the input that people can give,” Kalb says.

Lori De Milto is a Sicklerville, New Jersey-based freelance writer.

View a guidebook for applying for Social Security Disability Insurance benefits.

Contact a National MS Society MS Navigator.