I sustained a brain injury in May 2003 which caused me to be retro-amnesiac for 6 months. I have no memory from May when I went to bed after falling and hitting my head until sometime in late September 2003.
During that time I was in a 'walking coma'. Lights were on, nobody was home. I walked, talked and drove; even went to the doctor for routine issues and my MD didn't realize there was no one home.
The brain injury and it's resulting cognitive problems left me unable to continue earning a living in spite of the severe chronic, and sometimes excruciating, pain from nerve injury, joint injuries and over-use trauma as I had been doing for nearly 25 years.
In Nov 2003, my girlfriend took me to the SSA office and filed a SS Disability, (SSD), application on my behalf. At the time, I could not verbally communicate well enough to do so on my own.
I was denied SSD in Jan 2004, and appealed. I requested an administrative review and was denied a 2nd time in Feb 2004. It's only at that time you can request a hearing. Because of underfunding by the Repubs, there were not enough SS judges to keep up with the case load, (I didn't know this at the time).
If I recall correctly, there are nine SSD districts in the US. The district Oregon is in was behind by an average of over 2.5 years. This was not the worst backlogged district in the country, there were 1-2 with longer delays. (I didn't learn about this national backlog until 2006 or 2007, about the same time the military disability backlog and the nightmare at the Walter Reed Hospital came to light. There were a lot of parallels between what I experienced and what disabled veteran's experienced.)
About three years into my wait for a hearing, a friend offered to contact my US Rep on my behalf. I got a form; her office had developed a form specifically for the SSD mess because she received so many constituents contacts/pleas for help due to the backlog. That was the first realization my situation was not unique.
I got a hearing in May 2007. By that time, I had lost my business & only source of income, (cognitively, I could no longer operate my business). A $63,000 home equity loan I borrowed in 2002 went for living expenses. So, instead of adding on and improving my home from a two bedroom, one bath to a four bedroom, two & a half bath, plus an 1100 sq foot workshop.
The interior had been completely gutted and remodeled in 1998. The planned addition would have significantly increased the value of the little house I bought in '98 for $130,000, and put it on par with the $350,000 to $425,000 homes of the neighborhood.
The opportunity to capitalize on what was, to me, THE major investment of my life and security in my retired years was lost.
As the wait on a hearing grew longer, I eventually had no ability to pay my mortgage and was forced to sell to my gf. I had spent my life savings, retirement savings, investments, and cashed in life insurance just to live & pay doctors.
You have to pay doctors to document your disability to offset and counter the adversarial process of determining a SSD claim. In case you didn't know, SSD does not do that portion of a SSD claim. They perform the 'bookend' tasks of taking the application and administering the hearings, but the disability determination is 'block-grant' funded to the states. In Oregon, the same agency that handles Worker's Compensation disability handles SSD; they approach it as if everyone is scamming, just like Worker's Comp determination.
By the time I was declared disabled, (retroactive to my 50 birthday in 2003 - minus 18 months as per SS law), I had lost everything I had earned since beginning work at the age of 15. I am a pauper and have a place to live at the complete 'grace' of my girlfriend. No pressure on a relationship, there. (heavy snark)
My two whole life insurance policies had divested as per Bush law changes; they became term life and I received stock in the insurance companies in exchange. Because there was more than 2500.00 of value and considered 'cash on hand', I was forced to sell and spend it, before I could get 'peasant' assistance in the form of food stamps or assistance with the cost of Medicare insurance even though I was/am WAY below below the poverty level.
Before I got 'peasant' assistance, the cost of Medicare, Medicare 'Gap' insurance, (pays the 20% Medicare doesn't cover) and Part D Rx insurance, my monthly cost for health insurance was 39% of my SSD check. Not much left over for rent or bills or a car when you get ~900.00 a month. Can't own a car over 2500.00, any way. (THAT has since been increased to 6500.00, at least.)
When I did get a hearing in May 2004, the first thing the SSD judge said was, "Yours is a very complex case, I need to get someone to explain the medical terminology used in your medical files."
Then, addressing me, she said, "Can you recommend which kind of doctor I should get to translate your file for me?" (Why in the world was she asking me?)
She was a 15 year veteran SSD judge, not a rookie. (She did this every day, and didn't understand the medical terminology in the reports?)
She ended with, "Your hearing will be postponed until I get someone to translate."
I then had a July 2004 hearing. About 45 minutes into the hearing, my attorney finally started presenting my case. He literally said two sentences and she stopped him, saying, "I only scheduled an hour and 15 minutes for this hearing and I have another hearing starting immediately at 15 after the hour. This hearing will be re-scheduled to a later date." (Recall her first sentence in the May hearing? "Yours is a complex case..." Why in the world did she only schedule 75 minutes if it was "very complex"?)
I then had an August 2004 hearing. It lasted about 30 minutes; the jist of it was my attorney summarized my health and condition and then asked the Employment Specialist, (the un-introduced person sitting in the back of the room through the three hearings; everyone else had been introduced by the judge), 'if there were any jobs in the Portland area which One, I was qualified for and Two, which could accommodate my health issues.'
The employment specialist said, "No." Then left the room a few minutes later. Seriously. That was it.
I received a Notice of Determination in late September, 2004; three years and ten months after applying for SSD.
The entire process could have been finished in less than 90 days if SS was adequately funded, instead I was reduced to a pauper, in addition to being physical and mentally devastated.
I later found out the SSD judge doesn't open a case file until 15 minutes before the start of the hearing.
Oh, the person paid to come and 'translate' the medical terminology for the SSD judge: an MD who was no longer licensed to practice medicine in Oregon due to disciplinary actions, whose specialty had been hematologic cancer: a leukemia specialist, to explain neurologic and orthopedic terminology and brain injury.
The first thing he said in the hearing was to incorrectly define/explain cervical stenosis; his contribution(s) went downhill from there.
Remember, this entire four year nightmare was an effing INSURANCE claim; on an insurance policy I had paid into since age 15: FICA; hope to hell you never need it, but be glad it's there.
What in the name of all the Gods combined is wrong when a country extracts this sort of personal and social cost and devastation because someone falls off a ladder and damages their brain?
I grew up believing this was a country of people who pulled together and looked out for each other.
By the way, the SSD hearing process is still a mess, though slightly improved. I don't have the mental or physical capacity to advocate for improvement or even keep tabs on it. I struggle day to day, just with life.
As an addendum to my not very uplifting story, the problems of SSD COULD be solved by Medicare For All, (MFA). If everyone had insurance, the entire SSD process could be reduced to your personal physician stating you are disabled.
The need for the determination people to pay doctors and others for testing could be eliminated; disabled or not, health care would be guaranteed. The only decision would be if there is a job the person can do.
The eliminated costs of the SSD process could, instead, be used to offset the cost of Medicare.
If a doctor lies for a patient to get a SSD check, go after them.
A number of years before the Affordable Care Act, I got someone to help me figure out the logistic and economic impact of MFA on the SSD process. We then wrote a letter to Rep John Conyers, who, for many years, had proposed a Healthcare For All plan for the country. In the letter, I asked Mr Conyers if they had considered these impacts and if it was it part of the economic impact argument in favor of Healthcare For All.
I received a very nice letter thanking me for bringing these aspects of his plan to light, and "No, they had not thought of it."
Well, I tried to make the ending a bit more upbeat....