I have been receiving SSI since I was underage due to severe rheumatoid arthritis. My hands are deformed and weak, and I have joint stiffness on a regular basis that prevents me from doing simple tasks, such as opening a can or bottle...let alone doing other physical work.
I moved to Ohio 5 years ago and lived with my aunt. When transferring my SSI to Ohio, I told them that I paid my aunt approx. $150 a month (give or take) for basic rent. I also paid my own way and bought my own groceries. My SSI income was never reduced, it in fact stayed the same. I attempted to work at Pacific Sunwear to bring in more income for myself. I managed to force myself to work there for about 6 months before having to quit due to horrible pain. I lost some SSI due to bringing in extra income for myself, but I was happy knowing I was at least TRYING. After losing the battle of working, I still received the standard SSI income.


Recently, I moved back to NC to be with family. I am living in my mother's house, sharing a bedroom with my younger sister. Obviously, not the preferred situation for a 24 year old woman. I transferred my SSI benefits back to NC. I had been receiving $674 a month. I was lucky enough to finally get a hand me down car. It's a '93, so obviously it isn't in the best of shape and takes regular maintenance which I pay for....not yo mention the gas to actually get myself around. On top of keeping my car running, gas, and car insurance...I pay my mom approx. $150 a month for the basic rent. I also run errands for her constantly seeing as to how she works random hours. I also take my brother and sister to and from school everyday, which also drains my bank account for even MORE gas money. I purchase my own groceries (minus meat, which I don't eat much of...or will eat some of my family's occasionally"). I am TRYING to gain weight, and naturally have been trying to eat more...which means I buy quite a bit of groceries. Also, I have the basic needs and personal items I buy for myself. I had to turn my cell phone off a few months ago because I couldn't afford to fix my car with a cell phone bill. But with that choice, I do owe the company money for an early termination fee. I also owe my mother money for small loans I needed in order to move back to NC.
It took months for SSI & Medicaid to actually get the fact that I was a NC resident straight, so in those months, I accumulated medical bills. I also was forced to pay for my own birth control pills and other prescriptions I needed.

A lot, right?
Now they decide to finally update their systems on my residency MONTHS later and after numerous calls and trips to the local SSI office...and man.
They wasted NO time reducing my payments!
They reduced my payments to $449 a month, which is a big shock and slap in the face when you've been relying on a set amount to get by.

The woman on the phone said it was reduced because I don't pay my fair share of household expenses...included is property tax?!
I have received SSI for YEARS and have never, ever been told any of this information.
Also, paying my mother for temporary residence until I find a place that is income based means nothing..
The fact that I buy my own groceries means nothing because I keep them in the one refrigerator available.
I mark my food with my name because I was told that it is necessary for me to do that, but I also contribute to the family's groceries when needed.

With all of this being said, how is is fair to me that they can reduce it by over $200 for a temporary living arrangement?!
I have had the normal desires of a 24 year old and want to get out of my family's house and live like a normal adult.
With my disability, I am limited to what I can and can't do for myself.
My boyfriend and I have discussed finding a place together, but he is currently laid off and could not draw unemployment, but he has been steadily looking for a job.
I know there are income based apartments, but how do I manage to EVER live a somewhat "normal" life when the government has taken food out of my mouth?

What's even WORSE is that I know people who draw disability due to their "anxiety/depression/inability to function in normal society," yet they party, drink, and spend their SSI on drugs. They have kids and STILL spend their money on illegal drugs.
Yet I don't drink or do drugs, and never party. I try to do things the RIGHT way and want to make a life for myself...even eventually take some college courses.
I have the drive and desire to work for what I want and not rely on the government...but I have no choice. I have no choice but to live on what little I DO get, but now it's even LESS. How am I supposed to ever get out on my own on $449 a MONTH?!
I have been on SSI for years, obviously the doctors saw the extent of my condition and I was immediately approved.
They're leaving me with no choice but to worsen my condition and be in constant pain in order to make ends meet.
I thought the government was here to help the people who really needed it?
It makes me sick that some people can receive assistance and sell drugs, do drugs, make under the table "income" and not get a second thought.
Drug testing should be mandatory for ANYONE receiving government assistance because it's completely unfair that people take advantage of the funds and the people who really need and deserve it get cut off.


I called the local SSI office today and asked the woman if she could send me the forms for an appeal.
She refuted my request FOUR TIMES and told me there was nothing I can do since I'm not paying property taxes, housing insurance, electricity, water, etc.
What are my options, and when I do request an informal conference...what are my chances of actually achieving my request to receive the normal amount of SSI disability?

I'm panicking and stressed over this, I just need advice and tips on how to survive on a VERY limited income.