One of the most difficult decisions we must make as MS patients is whether to leave our careers behind, and apply for disability benefits. This decision is never easy, and the grief and sense of loss can be devastating. Depending on the level of career responsibility and education, many patients struggle with the concept of leaving the job market, and "retiring" at a young age. The emotional struggle aside, the process of disability application and qualification can be daunting to say the least.
Disability benefits in the US are separated by state and federal regulation. For example, in my home state of California, the first year of disability is covered by the state's Employment Development Department. This first year of disability is granted if the individual has worked enough in the previous couple of years to qualify. This process is fairly simple, and requires your physician to verify that you are indeed disabled. If you have earned enough income in the previous evaluation period (usually the year preceding application,) you are granted benefits. These benefits will appear on a benefit debit card bi-monthly, and will need to be periodically renewed by your physician. Each state approaches temporary disability differently, and some states unfortunately do not provide any disability insurance for workers. Only a handful of US states currently offer these programs:
California — State Disability Insurance and Paid Family Leave (Family Temporary Disability Insurance)
Hawaii — Hawaii Temporary Disability Insurance
New Jersey — New Jersey Temporary Disability Insurance
New York — New York Disability Benefits Law
Rhode Island — Rhode Island Temporary Disability Insurance
I was shocked to see how few states offer these programs. If you are fortunate enough to reside in one of the above states, you will definitely benefit from these programs should you need to apply for disability.
Aside from state programs, the only remaining option is typically Social Security Disability (SSDI.) This program is for individuals who are going to be either permanently disabled, or on long term (greater than one year,) disability. SSDI is not based on income, but rather on the years you have worked and contributed to the social security program through your earnings. You can go to the social security website to determine your qualifications:
http://www.ssa.gov/myaccount/. The link for applying online for benefits: http://www.ssa.gov/disabilityssi/apply.html.
At this site, you will be able to create an online account, and actually see what your benefits might be if you became disabled today. Again, this program is designed for those who have worked enough to qualify. There is an additional social security program called SSI, which is based on financial need rather than earnings. The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits. People who have worked long enough may also be able to receive Social Security disability or retirement benefits as well as SSI.
The link for SSI benefits: http://www.ssa.gov/disabilityssi/ssi.html.
The process of application for social security can be long, and quite frustrating. I would suggest applying immediately when your physician has determined that you will disabled long-term (longer than one year, or permanently.) The process requires numerous written application questions, detailed descriptions of daily activities, physical abilities, and specific physical and psychological disabilities. The process eventually leads to medical and psychological exams, sometimes by several physicians. It can take up to one year or longer to receive final approval or denial. If approved, the benefits will be pre-dated to the date of disability, and you will begin to receive monthly payments. If you are a parent, you can also receive benefits for your children monthly (this is a separate application!)
If you are denied (which happens in about half of multiple sclerosis cases,) you will begin an appeal process, and sometimes you must appear in front of an administrative law judge to argue your case. Though MS is considered a severe enough disease to qualify for disability, you must prove specific losses of function:
• You suffer from a disorganization of motor function in two extremities that has resulted in chronic disturbance of your gross and dexterous movements or gait; or
• You suffer from visual impairment that results in vision of 20/200 or less; or
• You suffer from mental impairment that prevents you from maintaining full-time work activity; or
• You suffer from reproducible fatigue of motor function with substantial muscle weakness when performing repetitive activity, which is demonstrated on physical examination and results from neurological dysfunction in the areas of the central nervous system that are known to be pathologically involved by the multiple sclerosis process.
This process can be overwhelming, but there are excellent resources out there to guide you. A few helpful links:
National MS Society: http://www.nationalmssociety.org/Resources-Support/Insurance-and-Financial-Information/Social-Security-Disability
If you reach the conclusion that you are ready to apply for disability, these programs are designed to help you continue to lead a healthy, stable life regardless of MS. There is help out there, and with a little patience and perseverance, you will be successful no matter what you choose to do. Good luck!