Editor’s Note: The patient experience in the management of a genetic disorder is rarely addressed, and poorly understood. Healthcare professionals often have no concept of the obstacles and frustrations patients face year after year as they work through the system to manage their personal, financial and medical affairs. The following article emphasizes the challenges patients must confront, and offers insight into areas of public policy and services delivery which must be addressed in the very near future.

My name is Rod Slaght and I am a person with a disability. I have been disabled since birth. The Social Security Disability System is so large at times it would seem to be unnavigable. I have had my share of ups and downs with the system. To an outsider it would seem they want to prevent you from succeeding. There appear to be many success stories, however data regarding long-term outcomes does not exist.

I was glancing through some papers that I picked up at one of the Mountain States Genetics Network’s meetings called alphabet soup. This reminded me that Social Security has its own alphabet soup recipe. The letters spell out words like SSA, SSI, spenddowns, etc. If you visit your local Social Security office, they have pamphlets that explain each of these rules and the dates they were put into place. I would like to take a moment to touch on a few of these rules.

For individuals in the Social Security System, your assets may not exceed $2,000 and personal bank accounts cannot exceed a set dollar amount. Your car may not be worth more than $2,000. This last one I find humorous; keep in mind the rule was written in the 1970s. Today, what sort of vehicle could one find for that dollar amount that would be reliable? This rule prompted me to do some research. I found two sources that helped me in this task. One, a banking institution, and the other, a professional person who writes budgets for a corporation, both came up with the same dollar figure. If you were to find a comparable car that you purchased in the 1970s for $2,000, today it would cost you $4,132. This amount was arrived at by using a "very conservative" three-percent-per-year rate of inflation over the last 24 years. Social Security wants us to become self-sufficient and gainfully employed. How can one achieve this without a reliable vehicle? Many businesses will not even hire without personal transportation.

I grew up with a strong work ethic and being on the rolls of disability is beyond frustrating. For example, you may earn a limited dollar amount. Mine was in the $300-per-month range. This amount varies from person to person. If you went over the set dollar amount your SSI would be cut by the excess overage, be it ten, 20 dollars, etc. Another way to say this is you would have to repay $1 for every $2 you went over. At times when I worked for a fast-food restaurant, I was required to work over my hours. If I did not, a strong suggestion of being terminated was voiced.

Your choices are to leave the system completely or stay with the system as it is. I certainly cannot afford the medical insurance that exists outside the Medicaid system. It would be unthinkable to be without it. We all know how difficult it is walking into an interview for employment when you have a list of limited hours and monthly income. This reduces your chances of being hired.

Currently, I am in college achieving a management degree. After I graduate, I most likely will get help from the Rehabilitation Center and work on a PASS Plan to become employed again. A PASS Plan allows you to shelter your SSI or SSA benefits while you are re-entering the work force. Check with your local rehabilitation center for more details.

I am not alone. There are thousands of people like me with disabilities in this situation. I continue to write letters to my Congressmen and other elected public officials to try to educate them about our circumstances. As you can see, this is a difficult maze to navigate, and yes, beyond frustration.

There are some new rumors stirring from Washington that greatly excite me regarding these issues. The outcome is unknown at this time. We only hope for the best.