System Fail

Learning to navigate this new world, the world of can't and have-to, can be both overwhelming and discouraging. It is especially frustrating when the very systems set up to help those with disabilities actually serve to impede progress. We, who spend so much time overcoming limitations, must go out of our way to explain and review those same limitation to prove that we need assistance in healing and overcoming challenges. I had to request some documents from my Social Security case because of a mix-up with paperwork. Due to the nature of the paperwork it was necessary for me to request the documents from my local office.

Sitting in the Social Security office felt so completely different from my other interactions through phone calls and online support. Petitioners collect into a large room just off of a hallway, an armed security guard at the front of the room. We take a number and sit in chairs, watching a screen as we wait for our number to be called. We sit with stacks of paper, some crying, all tense, and wait. Sitting there it feels like the very hope in your cells is being drained away and you are left a husk, a shell, empty of all vitality.

After everything vital has been drained from you, you wait some more. Sadly my wait was not considered long compared to what others have done. Your number is called and you are directed down a long hallway of glassed booths. High walls, squeaking chairs, and hard floors reminiscent of a school cafeteria create a hallway of pain. Petitioners speak through small round holes into the windows, at the workers inside.

Separated from each other and restricted from any meaningful connections, the workers provide documents and pens to complete forms. You can hear muffled cries, scuffles, and whimpers around you. There is nothing to absorb the sounds of grief and pain, no softening, no contact with one another. For me, the sounds ricochet and build, making my sound sensitivity unbearable. My husband has to help me fill out the simple request form. My worker leaves me to complete the form and returns when I am done.

I am told that records, though stored through this location, are not accessible at this time and I will receive a response in the mail in a few weeks.

I do receive a response, there is a $44 fee to retrieve the records before I can have them sent on to a third party, like my medical provider. I am not allowed to directly receive a copy of the report, I am the patient, not a medical provider.

More than 8 weeks from my initial petition and there is no sign that the records have shown up at my providers office. So, we wait.

How much time to petitioners spend in limbo trying to understand the status of their case? Trying to access help? Trying to find ways to cope with life altering situations?

I am blessed. I have wonderful medical providers who help me to navigate this world. My case manager through Social Security has been both helpful and concerned for my recovery. I am stuck on the level of demoralization that came from sitting in an office, making a records request that could not be done over the phone or by mail. I pray that I never have to return to the office. It feels horrible. I cant imagine the effort to get up each day and go into that office by the workers. I was never treated unkindly, but the very nature of the sterile environment and an armed guard greeting the disabled and inform as they complete requests for information is demoralizing. There has to be a better way to greet those most in need. We can do better, don't you think?