The disability process takes a toll on both the physical and emotional health. I refused to give in for so long, but I finally was forced to admit defeat. It took a huge emotional and physical toll on me to fill out the paperwork, which was extensive, then wait for a stranger, a non-medical clerk hidden in my state’s capitol, to make what seems like a very arbitrary decision as to whether or not I am capable of working.

This is the most demoralizing process I have ever been through, and that is saying a lot. I have had to turn over every intimate detail of my life and illness to the government, and when that did not suffice, I had the…ahem…privilege…of turning over that same information to a law firm.

The disability system is set up to handle physical disabilities; medical ones just do not fit neatly into their boxes. So the questions do not always line up, and much more attention has to be paid to additional information sections. Yes, I can lift fifteen pounds – on my good days. The problem is I may go two months without a good day, and two weeks of that could be spent in the hospital, an additional two to four weeks bedridden.

The process is incredibly backed up. From my application date to my court date will be two and a half years. What do people do who do not have a spouse with a good job and insurance? Over two years just to get in front of a judge, because I have a disease so rare, and it’s not terminal, the clerks making the decisions cannot pronounce it much less make a decision.

I understand there are people who abuse the system. Someone will find a way to take advantage of every system. However, that does not mean everyone else should have to suffer endlessly to compensate for it!

The Steps in the Process (NOLO)

  1. Initial Application: This goes to the state. Most claims are denied unless terminal. Average time is 3-4 months.
  2. Reconsideration: This is an appeal of the first denial. Several states have done away with this step. Average time is another 3-4 months.
  3. Hearing Level: It’s time to see a judge! The wait time here varies by state – anywhere from 8-24 months!
  4. Appeal’s Council: If you are denied at stage 3, this can take up to a year.
  5. Federal Appeal: This is the final appeal; wait time is approximately 8 months.

By stage three, a lawyer is a necessity. The law limits attorney fees to 25% or $6,000, whichever is less. The majority of cases require an attorney.

How unfair and taxing is all of this? If you are sick enough to need social security disability, should you really have to deal with this cumbersome process? And again, how are you supposed to survive while going through it?

There has to be a better, more efficient way. First and foremost, there should be a two-tiered approach that allows for medical disability and physical disability, with the appropriate paperwork and questions asked. Perhaps more knowledgeable, trained personnel making decisions at the state level; realizing that so many weeks in the hospital would make holding down any job impossible.

I am no expert, certainly. But I will say that for all the trouble everyone goes to for HIPPA to keep my medical information private, I feel like the entire universe knows every intimate detail of my life now. And I’m not even done yet.


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