The Impatience with Bureaucracy: Waiting to be Heard

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Today I need to vent my frustrations at the “protocol” that people must follow in order to get help from our government if we are unable to work. That’s right… I am labeled as someone who cannot be hired because I have a problem remembering things. This is a fact. I have dementia. I have a problem with word retrieval and I get tired very easily. And, I am only 48 years old.

I have lost two jobs as a result of this disease. I filed for disability because I have no other choices. I am not able to get medical clearance for unemployment. That was 18 months ago. I’m still waiting to have a Hearing because I have been denied SSDI twice. At the Hearing my wife will have to do most of the talking because talking to a panel of people scares me to death. It didn’t use to. There was a day that I could stand up in front of hundreds and hold my own at a heated meeting, speak to a large group of kids at a summer camp, and even enter karaoke singing contests. Now I can hold my own at family events for a short time, but the thought of talking to a group of strangers cripples me.

I can’t help but think that if I could have had a Hearing 18 months ago, I could have gone toe to toe with them without batting an eyelash. But, a lot has changed since then. I used to be poised and confident. Now I’m timid and fragile. I hate it. The worst part is that I am aware of what I am losing. I miss going to work and being around people. I miss my friends, or the ones that I thought were my friends. No one comes to visit really because they don’t know what to say, and I understand that. I’m not bitter about them not visiting… I just miss them.

I finally have a hearing date on Feb. 2, 2015. This is just a Hearing and it is by no means a guarantee that things will go the way that I need them to go. My wife and I have basically been living off her income alone since April 18, 2013. We still have two vehicle payments, a mortgage, insurance, utilities… I have been able to work for my in-law’s periodically to help supplement an income, but it is by no means even remotely close to the salary that I was bringing in nearly two years ago. The people from Citizen’s Disability told us that if we were to get a shut-off notice from our power company than that would put us on the “fast track” for a Hearing. We tried that. It didn’t work. So they then told us that if we didn’t pay our mortgage than that would absolutely get our name on the fast track list. There is no way that I was going to let that happen. We are going through enough crap without jeopardizing losing our home too. All we are continually being told is “these things take time.”  We have borrowed nearly $12,000 just to keep things afloat over these 18 months and I shudder to think about the people who don’t have help. What do they do? We have been told that by the time most people get Disability, they have lost everything. Am I being penalized for my diagnosis? Probably not intentionally, but all of us who face these challenges have to wonder. Are they hoping that a certain percentage of us will die and not “have” to collect Disability so that their final expenditures are less than anticipated? Can they then toot their own horn at the savings from the few who passed away before being able to collect, which would have in turn perhaps lengthened their lives?

I don’t want this blog to be disheartening and political. I just want fairness. Why does it take so long? Why do we have to file papers multiple times with multiple people? We have hired a firm that “works” for us and will receive 25% of my final settlement up to $6000. We hired them in May of 2013 and have heard from them a handful of times. We have been satisfied for the most part as they are at the mercy of Social Security and Disability as well, so they are basically getting the same answers we are. The best part of hiring them is that they are a group of lawyers who specialize in these types of claims. But, I worry about the people out there that are facing the same challenges as I am and don’t have the resources or means for this kind of help. We had to do some homework of our own to get where we are in this process and look where we are nearly two years later.

SSDI kept telling us that it would still be about 6 months before we would even get a Hearing date, it would be another 6 months for the Hearing, and another 6 months before we would receive funds. My wife is a school teacher and knows a lot of people who know people. After hearing about this thing called a Compassionate Allowance, we started to research it. That was the smartest thing we did. In September of this year we told our Senators that we were not eating because we didn’t have any food. Two weeks later we were told that we qualified for the “fast track” and we received a Hearing date six months from the phone call. I wonder how long we would have had to wait without the “fast track”?  I feel like SSDI should have told us about this program. Why did we have to hear about it from our Senators? Why do we have to beg? They should know that if we are out of work and can’t be hired because the doctors won’t give me medical clearance, that we are no longer going to be able to pay our bills, let alone purchase groceries. Why in heaven’s name could they possibly think that we can hold on for this long? As if the medical diagnosis isn’t bad enough, I feel like I am reduced to begging. I have lost it all: My job, my health, my assets, and my dignity. Granted, most people diagnosed with Dementia are not 48. However, with an average life expectancy of 7-10 years wouldn’t it be great if we didn’t have to waste 2-3 years waiting for help. It would be nice if during my last years, I could live with SOME dignity.

Without some serious planning, victims and their families are at risk of losing everything that they were hoping to leave to their families or other loved ones. For us, our Eldercare Lawyers have given us a great deal of help in order to be sure that I get what I need and we don’t lose everything for my future care. What happens to people who don’t see these specialized people? I have a pretty good idea and it’s not right. That is something that we should not have to worry about on top of what we have already unfortunately been given. The medical diagnosis is bad enough. The legal and financial strain is overwhelming. These issues need to be addressed and corrected. We are already paying a price by being robbed of time lost with our wives, husbands, partners, brothers, sisters and grandchildren, some of which we will never meet. My prayer is that we can be a voice for the voiceless and help to make needed changes in our fractured system.

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