I have over the years felt like the disability benefits topic has largely been swept under the rug. Doctors and financial advisors don't talk about it, patients don't talk about it, parents of patients don't talk about it. Maybe they do and I am just missing the conversation but seriously even when I have been struggling to pay for medications and/or treatments no one brings it up as a possibility. The only reason I know about it is because my mother collected SSI for me after my dad passed away when I was 15. Essentially it is drawing his Social Security benefits for the support of his disabled child (me). Our case worker at DHS helped my mom through the benefits maze and found that it might be possible for me to collect disability upon turning 18.
Well, I being a stubborn soul didn't think that was necessary and that I could work just as hard and just as long as the next person. WRONG. After lots of missed time from work and needing supplemental health insurance we looked in to it again when I was 20. In 2001 I was awarded the ability to draw Social Security benefits in the form of disability. This did not come easy. There were attorney's, visits to physicians that Social Security had appointed along with medical data collection from my doctors. My medical file is seriously a room full. In the end Social Security declared Cystic Fibrosis to be a disability that hinders one's ability to support themselves.
I still, after, 8 years of collecting the benefits feel weird about it. In fact, I really don't tell the world (until today) that my income largely comes from the benefits. The biggest reason of having the disability benefits is that it's linked with Medicare and other medical benefits, like hospital coverage. Without the supplements I can't even begin to think about what kind of medical care I would be getting. No joke.
Every so often I get a Notice of Continuing Disability Review in the mail from Social Security. This time they are looking as far back as 2006 to determine if I am still disabled and still eligible to receive the benefits. This process always makes me nervous. I don't know who is reviewing my case, what their credentials are or if they even have any idea what CF is. It would be devastating to loose the benefits. I wish there was some sort of tracking system that could show Social Security what diseases have been cured and what diseases still have a death sentence attached.
I do want to make a point that I don't rely completely on the benefits. I do give back to the benefits pool by working as much as I can when I can. Not that I owe anyone an explanation, I mean, I wasn't in an accident caused by my drinking driving leaving me disabled. I have no control over it, I had no say nor did my parents at that time.
Furthermore, if your a cyster or fibro or parent to one you might want to look into your state's Social Security benefits programs. They were created for a reason. There is no shame. Shame should be placed on the pharmaceuticals companies banking millions off drugs you need to stay alive, shame should be placed on insurance companies for turning patients away when they need life-saving treatments or surgeries.
Notice of Continuing Disability Review is still pending........
~Doodlin'
Well, I being a stubborn soul didn't think that was necessary and that I could work just as hard and just as long as the next person. WRONG. After lots of missed time from work and needing supplemental health insurance we looked in to it again when I was 20. In 2001 I was awarded the ability to draw Social Security benefits in the form of disability. This did not come easy. There were attorney's, visits to physicians that Social Security had appointed along with medical data collection from my doctors. My medical file is seriously a room full. In the end Social Security declared Cystic Fibrosis to be a disability that hinders one's ability to support themselves.
I still, after, 8 years of collecting the benefits feel weird about it. In fact, I really don't tell the world (until today) that my income largely comes from the benefits. The biggest reason of having the disability benefits is that it's linked with Medicare and other medical benefits, like hospital coverage. Without the supplements I can't even begin to think about what kind of medical care I would be getting. No joke.
Every so often I get a Notice of Continuing Disability Review in the mail from Social Security. This time they are looking as far back as 2006 to determine if I am still disabled and still eligible to receive the benefits. This process always makes me nervous. I don't know who is reviewing my case, what their credentials are or if they even have any idea what CF is. It would be devastating to loose the benefits. I wish there was some sort of tracking system that could show Social Security what diseases have been cured and what diseases still have a death sentence attached.
I do want to make a point that I don't rely completely on the benefits. I do give back to the benefits pool by working as much as I can when I can. Not that I owe anyone an explanation, I mean, I wasn't in an accident caused by my drinking driving leaving me disabled. I have no control over it, I had no say nor did my parents at that time.
Furthermore, if your a cyster or fibro or parent to one you might want to look into your state's Social Security benefits programs. They were created for a reason. There is no shame. Shame should be placed on the pharmaceuticals companies banking millions off drugs you need to stay alive, shame should be placed on insurance companies for turning patients away when they need life-saving treatments or surgeries.
Notice of Continuing Disability Review is still pending........
~Doodlin'
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