Navigating the Disability Insurance Maze

Recap: Conquer MG Webinar – March 18, 2021

You’ve received a diagnosis of myasthenia gravis. Now, questions about work and disability benefits may be looming. Attorney Mark DeBofsky discussed the challenges that individuals who have MG encounter when applying for disability benefits.

Mr. DeBofsky is a partner with DeBofsky Sherman Casciari Reynolds P.C., as well as an adjunct professor of law at University of Illinois-Chicago John Marshall Law School. In addition to his legal practice, which is focused on representing disabled individuals seeking disability insurance and other benefits, he is a regular columnist for both Law360 and the Chicago Daily Law Bulletin, an annual contributor to the ERISA Survey of Federal Circuits published by the ABA, and served for many years as a senior editor of Employee Benefits Law published by Bloomberg.

Mr. DeBofsky’s full presentation is on the Conquer MG YouTube channel.

These topics are discussed below:

  • What does “disability” mean?
  • Sources of disability benefits
  • Am I eligible for social security?
  • Other types of disability insurance
  • Should I apply for both?
  • Can my doctor say I’m disabled?
  • What suggestions do you have for my initial disability claim?
  • What role can an attorney play?
  • If your claim is denied

When you speak of disability benefits, what does “disability” mean?

Unlike its meaning in everyday conversation, benefit programs look at three perspectives when using the term “disability”:

  • With social security and other government programs, government statutes define disability. With private disability insurance, the insurance policy provides a legal definition.
  • What is your diagnosis, and how do your symptoms limit you physically or mentally?
  • Can you perform the duties of your regular occupation, or any occupation?

Sources of Disability Benefits

If you become disabled, you may be eligible to receive benefits from one of these government programs. (We’ll talk more about employer and private disability insurance programs later.)

  • Social Security Disability Insurance (SSDI)
  • Supplemental Security Income (SSI)

To qualify for benefits under either program, the criteria are the same. You must show you are unable to engage in “any substantial gainful activity.” This means you’re not able to work at all. Social security law has no provision for partial disability – being able to work at some duties, or being able to work some of the time.

The SSDI program is for people who have paid FICA payroll taxes into the social security system during their work lives. If you don’t have enough work credits under social security and have no financial resources, but are disabled, you could qualify instead for SSI benefits.

Am I eligible for Social Security benefits?

To determine if you are incapable of engaging in substantial gainful activity, the Social Security Administration checks its list of qualifying impairments.  If you meet the medical criteria at 11.12 (listed below), then you qualify.

The criteria for MG are difficult to meet.  If you don’t meet the criteria, you still might qualify for benefits if your vocational prospects are such that you would not be able to do gainful work in any capacity. In this case, the Social Security Administration will ask if you’re capable of returning to your past regular occupation. If not, then Social Security will ask if there are any other jobs you’re fit physically and mentally to perform. If not, then you qualify for disability benefits.

11.12 – Myasthenia gravis, characterized by A, B, or C despite adherence to prescribed treatment for at least 3 months (see 11.00C):

  1. Disorganization of motor function in two extremities (see 11.00D1), resulting in an extreme limitation (see 11.00D2) in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities.


  1. Bulbar and neuromuscular dysfunction (see 11.00F), resulting in:
    • One myasthenic crisis requiring mechanical ventilation; or
    • Need for supplemental enteral nutrition via a gastrostomy or parenteral nutrition via a central venous catheter.


  1. Marked limitation (see 11.00G2) in physical functioning (see 11.00G3a), and in one of the following:
  • Understanding, remembering, or applying information (see 00G3b(i)); or
  • Interacting with others (see 00G3b(ii)); or
  • Concentrating, persisting, or maintaining pace (see 00G3b(iii)); or
  • Adapting or managing oneself (see 00G3b(iv)).

Other disability insurance

If you work for an employer who offers group disability insurance, or if you’ve purchased private disability insurance, these would be additional sources of disability income.

Occupational disability policies pay benefits if you’re unable to perform the duties of your regular occupation. Generally you qualify if you’re not able to perform any material duty of the job. (For example, a surgeon who can no longer perform surgery, but still can see patients in the clinic, might qualify for these benefits.)

General disability policies ask whether you can perform any occupation for which you are fitted by reason of age, education and experience. These policies consider the income you were making before disability. Group disability insurance might use both definitions. A typical plan pays benefits for the first 24 months if you’re not able to perform your regular job; after 24 months you have to be unable to perform the duties of any occupation for which you’re suited that would be consistent with your prior earnings.

Residual (or partial) disability policies pay benefits if you can perform some of the duties of your occupation but not all of them, or if you can work part – but not all – of the time

Should I apply for both?

In a word, yes. It’s important to apply for both social security benefits and any private/employer disability insurance you have. This is true even if the benefit you receive from your private/employer policy is reduced (offset) by the amount of benefits you receive from social security. Here’s why:

  • If you qualify for social security disability benefits, you’ll receive a cost-of-living increase (COLA) each year, which is rare with individual insurance. Your benefit amount from the plan won’t be reduced in the future by any social security COLAs you receive.
  • When social security disability benefits begin, your income is frozen for calculating future social security retirement benefits. Otherwise, the Social Security Administration will average in zeros for each year you’re not in the workforce and not receiving social security disability benefits. So your social security benefit at retirement will be lower.
  • If you qualify for social security disability benefits, you may qualify for Medicare before age 65. Medicare benefits start 29 months after the date Social Security finds you disabled. If you have medical coverage under COBRA (for up to 18 months), you can contact your COBRA plan administrator to get an additional 11 months of COBRA coverage to close the gap to Medicare.
  • Your disability plan may help with your social security benefit application. If you get approved, the employer plan will find it harder to deny your claim with its plan.

Can my doctor say I’m disabled?

Medical data from your doctor is an important part of your application. An opinion from a doctor who has treated you over time will be considered. However, neither social security nor private insurance will accept “a note from your doctor” saying you can’t work. A doctor can provide a diagnosis and indicate your physical and mental limitations. A doctor is not qualified to decide whether or not you can work at a particular occupation or whether you cannot work at all.

What suggestions do you have for my initial disability claim?

  • Some people are very stoic. When your doctor asks how you’re doing, now is not the time to say “fine.” Tell your doctor everything that’s going on with your health.
  • The most important information is objective medical evidence – any information that can be determined by medical test or clinical observation.
  • Describe impairments that are consistent with the known symptoms of the disease. For MG, this includes weakness in the limbs, core, and neck, drooping eyelids and double vision, as well as swallowing or breathing difficulty. With MG, fatigue also is a known symptom, so reports and evidence of fatigue are likely to be credited.
  • If you have more than one medical issue, each one should be addressed in the application.
  • Describe your response to treatment, and also report on side effects of medications, because they may hamper your ability to work.
  • Include observations of others. For example, a spouse might report observations such as, after 3pm I’ve noticed my wife/husband has trouble finding words/needs to lie down, or goes to bed at 6:30pm because he’s exhausted, or exhaustion is visible on his face.
  • Your doctor doesn’t live with you 24 hours a day. Note how your disability has affected your daily living, and include aspects of regular life that you’ve missed (pre- or post-COVID!), such as “couldn’t attend daughter’s recital” or “had to miss the family Thanksgiving dinner.”
  • AMA, Guides to the Evaluation of Permanent Impairment (6th ed.) is a reference used by disability insurers. The guides require the symptoms of pain and fatigue be considered.
  • Some tests may be useful to provide objective evidence of cognitive impairment, fatigue, or lack of stamina, such as SF-36, Karnofsky Performance Status, functional capacity evaluations, and neuropsychological testing (“gold standard” but exhausting). (Editor’s note: There also are MG-specific tests such as the myasthenia gravis activities of daily living (MG-ADL) profile and Quantitative MG (QMG) score.)

If your claim is denied

If your claim for social security benefits is denied and you decide to pursue it further, you will have a hearing before an Administrative Law judge. At this time, the Administrative Law courts have a significant backlog of cases. In the past, about 60% of cases heard by Administrative Law judges went in favor of the claimant; that number is now closer to 40%. If you lose and decide to appeal this decision, your case will go to a federal court. At this time the reversal rate in federal court is very high. So if your claim has been denied by an Administrative Law judge, you should consider appealing to a federal court.

With individual claims, instead of a hearing process there generally is an appeal process with the insurance company. If you’re dissatisfied there and are not successful with your appeal, you can take your case to federal court. Many private disability insurance claims are governed by the federal ERISA law which covers employee benefit plans.

What role can an attorney play?

Mr. DeBofsky notes there is very little an attorney can do to influence the outcome of your initial application for social security disability benefits. However, attorney representation is of value to help with a social security claim denial, especially if you are going to have a hearing before an Administrative Law judge.

When it comes to private insurance, it can be helpful to have an attorney guide you in submitting the initial application for benefits, but you should have attorney representation if your claim is denied. “There are critical dates and evidence requirements that must be complied with. If the case later ends up in court, and there was a misstep in the appeal process it may not be correctable when you get to court.”

Mr. DeBofsky also notes:

  • Part of the attorney’s responsibility is to work with the treating doctor to ensure the medical evidence is consistent with what’s needed on the claim. “I never suggest to doctors what should be reported. But I help doctors understand what should be tracked in the client’s medical record, and clarify the terminology.” For instance, a doctor might use the term “sedentary,” and intend the client should generally stay home, minimize errands, and spend part of the day resting. An insurance company could interpret that as sedentary employment, with daily commute to a desk job.
  • The attorney can prepare the treating doctor to respond to insurance company questions – to request questions in writing, or to request that he/she be allowed to review oral responses and make corrections.