Cassandra Kutner’s Story Isn’t That Unusual.

Though suffering with multiple sclerosis, the 30-year-old New Jersey woman continued working as a paralegal until her condition became so debilitating that she had to quit work.

When she did, she assumed that she would be eligible for Social Security Disability benefits, having paid into the system for her entire working life.

  • That’s when things went sour for her and her family. She applied for the first time on July 20, 2007, and she was told just three weeks ago that that first application was denied. There wasn’t enough medical evidence proving that she really is disabled, according to documents.

While the Social Security bureaucracy is difficult for all disabled people, it can be particularly trying for people with MS because the rules regarding MS and disability are so strict and haven’t been updated in years.

The Kutners’ hopelessness is not unique. Thousands of people with multiple sclerosis nationwide are trying to hold out while Social Security catches up on its paperwork.

  • Shawn O’Neail, the National MS Society’s associate vice president of federal government relations, said people with multiple sclerosis are being denied benefits all over the country – but in varying percentages from state to state.
  • In Utah, only 24 percent of patients diagnosed with the disease were given disability in the last fiscal year. However, 77.8 percent of those with MS in Hawaii received disability in the same time frame. O’Neail said the “outdated criteria” for determining disability for those with multiple sclerosis make the numbers seem so divergent, if not arbitrary.
  • “The bad part is, the criteria haven’t been updated in 25 years,” he said. “They are in dire need of updating.”
  • John Shallman, a Social Security spokesman, said that New Jersey denied nearly 50 percent of those with MS, with 339 approved for disability and 331 turned away in the last fiscal year. He said that definitions affecting MS are “very strict” because of the level of complexity classifying the disease. There are no typical rejections, he said, because there are variables in every case, which include age, education, level and ability to work. Also, since MS is a disease that is cyclical and varies in severity and day-to-day effects, Social Security attempts to use as many doctors’ opinions and a cross-section of factors that determine the disability decision.

The guidelines are set to be reviewed this year, which may provide some relief for people like Cassandra Kutner who are suffering from a debilitating disease but have been denied disability benefits.