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Spotlight on Multiple Sclerosis and SSDI

March is MS Awareness Month

March is Multiple Sclerosis Awareness Month, and a good time to raise awareness of the debilitating impact the disease can have on individuals, families and society as a whole. The National Institutes of Health estimates that 250,000 to 350,000 people in the U.S. have been diagnosed with multiple sclerosis (MS).Many of these individuals work, manage and treat their MS while maintaining a relatively financially secure and healthy lifestyle. However, some experience a severe, long-term disability.

Individuals with MS often face significant financial burdens and high rates of unemployment. A 2008 review of more than 8,000 MS patients found that problems with mobility, hand function, fatigue and cognitive performance were most associated with increased odds of becoming unemployed.

MS is diagnosed most often in people ages 20 to 40 that are establishing and settling in to their careers.  According to the National MS Society, the average individual with MS leaves the workforce 10 years after diagnosis.

Not being able to continue working can be a devastating experience mentally, emotionally and financially. However, understanding the rights, benefits and options for former workers under Social Security can help minimize income disruption, protect retirement and other disability benefits and even improve health outcomes.

Most workers pay FICA taxes to be insured against a long-term disability. FICA stands for "Federal Insurance Contributions Act" and is the mandatory 6.2 percent payroll deduction American workers pay into the Social Security Trust fund. Employers pay an additional 6.2 percent for a total of 12.4 percent of a worker's income. An additional 1.45 percent tax is collected to fund Medicare, and this is also matched by employers. The Social Security Trust fund provides retirement income, disability insurance, Medicare and benefits for dependents and survivors.

To qualify for SSDI, one must be considered totally disabled and unable to engage in substantial gainful activity (defined as making more than $1,040per month).  Many people with MS are unable to work full-time, but can manage part-time or occasional employment.

SSDI provides:

  • Regular monthly income and annual cost-of-living increases. A portion of Social Security disability benefits may be tax free.
  • Medicare coverage, regardless of your age, 24 months after your date of entitlement to SSDI.
  • Possible COBRA extension of an additional 11 months if you receive SSDI benefits.
  • Retirement benefits protection. Social Security disability entitlement "freezes" Social Security earnings records during your period of disability. Because the years in which you collect SSDI benefits are not counted when computing future benefits, your Social Security retirement benefits may be higher than if your earnings were averaged over a greater number of years. When you reach retirement age, SSDI ends and you transition to Social Security retirement benefits.
  • Dependent benefits. If you receive SSDI benefits and you have dependents under age 18, they also may be eligible for benefits.
  • Return-to-work incentives. Social Security provides opportunities to return to work while still paying disability benefits.

Most long-term disability (LTD) policies require individuals to file for SSDI. Complying with this requirement could help protect an individual's ability to receive LTD income.

According to a government report, individuals with MS are among those most often denied SSDI benefits at the initial level (47 percent), yet subsequently approved at the appeals level, when they are most likely to have professional representation. The report concluded that SSDI representatives can help individuals get through the Social Security disability backlog faster, shaving as much as 500 days off of the process.

The National MS Society reports that the average cost of living with MS is $69,000 a year while the median U.S. income is $49,000.  Despite their disability, most people with MS have a normal life span. A 1998 survey estimated the total lifetime cost per MS patient to be $2.2 million. 

It pays to be prepared. If you would like help determining your SSDI eligibility and next steps, visit or call (888) 841-2126 to speak with a disability specialist.

For more information on MS Awareness Month and additional MS resources, visit the following organizations' websites.