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Supplemental Security Income & Hep C
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Supplemental Security Income & Hep C

Does anyone know how to get SSI (Supplemental Security Income) if you've got Hepatitis C?  

Hepatitis C is on the Digestive System list of impairments.

The rules clearly state you have to have a physical or mental condition that prevents you from doing any type of work to qualify.  I know many people who can't work while going thru tx.  Does this apply to anyone?

You have to have certain symptoms that limit your ability to work (such as too fatigued or sick to do anything).  
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I personally, don't enjoy the prejudice that I get from others for the fact that I made the decision to go on disability.  Excuse me, I worked for MANY years and paid into the system.  I didn't just go up and say, give me a hand out w/o putting in my time.  I started working at 16 yrs old.  I worked all the way up until I was in my 40's.  I struggled w/going on the disability.  It's hard to live on it.  It's even harder when people judge you.  I'm happy for those of you who are and were able to hold down your jobs, keep your jobs.  Try doing that through 10 treatments. Over and over again having to ask for time off from work for doctor's appt.'s, liver sono's, liver biopsies, labwork, clinical trials that want you there every week...., not to mention the side effects from doing 10 treatments.  I've had so many mental side effects, "lingering chemo brain" , etc., etc.  I WANT to be able to make more money than the poverty level wages that I get from our government, which excuse me, is less than $12,000 a yr.  I made hugely more than that when I was working.  I'm tired of trying to rationalize this....    You either understand my plight, or you don't..., that's totally up to you.  I'm the one that is having to live with my decision and believe me, it is not pretty!

Susan400
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It's my understanding that unless a disease renders you permanently disabled you are not eligible for SSI.  Long or short term disability may apply if you have that benefit through your employer.  If your employer has over 50 employees you are eligible for FMLA with a doctors consent but no compensation is made during the leave of absence.

Very few people are given disability benefits due to hepc, treatment or complications from the virus or treatment.  If they are it's a very long process to secure those benefits.

Trinity
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"Very few people are given disability benefits due to hepc, treatment or complications from the virus or treatment.  If they are it's a very long process to secure those benefits"

The above applies to government aid.
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You're right, very few people are won during the initial approval process, most cases are won during the appeals process, where cases can't be mishandled.  The way to get approved is to just not take no for an answer.  

If you hire an attorney that charges you based on a contingency fee (backpay) 25% of your winnings, you also have a better chance at winning your case.

As far as disease being permanent.  Hep C would definitely qualify under that guideline.  Once you have it,, you've got it, unless you're lucky enough to clear it with treatment.  

I think the rules clearly state (as far as the permanent issues goes), Your condition as you stated above, (permanent) has to of lasted, at least 12 months,, or is expected to result in death.  Which would most likely be the case with Hep C, but this has to have SYMPTOMS that prevent you from doing any type of work.  Such as how long or how far can you do something?  How does Hep C limit your ability to work?

If you're in Cirrohis or have a decompensated liver, or have liver disease, in my opinion this would definitey qualify you for SSI.   As you stated above with work.  Work credits accumulated are counted when applying for Social Security Disability which is entirely separete from SSI.  

Things like having an education, is going to come into play to hurt your chances of getting approved.  

You literally have to be disabled or have a really good attorney to win your case.  They will consider whether you can sit at a desk and type words on your computer.  If you can do that you might not get it.  The rules of qualifying vary state by state and the chances of getting approved during the initial approval process are slim to none.  
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NO, You can get awarded benefits if you know how.  READ THIS, it may help you!!!!!!!!!!

http://heppie2000.tripod.com/index-3.html
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Cory,

You're 26 years old.  You mean to tell me you want to go out on disability?
I'm almost 58 years old with stage 3/4 and I have no intention of applying for disability.
That thought would never cross my mind unless I was absolutely incapacitated.
Are you saying the effects of hepc are so debilitating that they have rendered you disabled or are you just looking for angles to work the system?

Trinity

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You have to list all health issues and mental issues and NOT just HepC AND get a lawyer after being turned down the first time.  Some people can handle working on treatment, other cannot.  I worked for my first 4 TX's and after that, the toll that the TX's and the mental problems the TX and the recuperation time for said TX's, got to be too much for me to be able to keep a job.  I was turned down 3 times and finally got a lawyer and was approved, but not just based on the HepC.  It was based on the mental performance factors as well. BTW, I have SSDI and NOT SSI.  

Susan400
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SSI benefits are for people unable to work and earn a full living because of their physical impairments. In Nevada for example, you not only have to have proof (x-rays, medical records, etc..) from you doctor, but then you are sent to a "State Of Nevada" doctor who further scrutinizes your disability. After that, it goes to a board of doctors who are contracted by the state, to make a final decision.

It's a long long road even after that before you are actually going to be approved and get benefits. This, because of cheaters in the past who have caused all these steps before the government gives you benefits. With today's economy and states having to scrounge for funds for schools, policemen, firemen and such, the scrutiny is much more amplified.

Magnum
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We've all got Hepatitis C.  Basically, Hep C is on the list of Digestive System List of Impairments.  You should automatically qualify.  I don't know why anyone wouldn't want to give this a shot.  

If this condition doesn't render someone disabled (after several tx attempts) I don't know what would.  Especially, someone not being able to work while going thru TX.....  People have to put their lives on hold, and stop work to get thru it.......  Even after TX, it leaves people with other conditions, as Susan pointed out.  These should definitely be listed, EX (high blood pressure, fatigue, no energy, depression, or anxiety).  Which all occur from Chemotherapy drugs.)  Doctors will often offer notice your pain while going thru tx, and offer anti-depressants during or after tx.  

Trinity, yes, things like age, do come into play, but, age is not a determining factor when deciding if someone is disabled.  A biopsy would be the only way to determine how much disease progression you have.........
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Interesting reading, but as I mentioned before, it's a long long road before you get benefits, then don't forget, you have to qualify again EACH YEAR thereafter, and there's attorney fees if you get turned down in the beginning. I think it's easier to meet the president than to get SSI.

Your Social Security office will send you a notice each year to see if you qualify. Here we go again with medical records, doctor's medical release forms. Forms, forms, forms, questions, questions, questions, paperwork up the gazoo. The government is not ready to give away money unless they are positive you qualify.

How do I know all this? I’m on SSI... The best of luck to you...

Magnum
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I wouldn't give disability a shot unless it was a have to situation.  I treated 72 weeks and so far have no long term side effects that I feel are disabling.  I've dealt with depression and fatigue on treatment and still do at times but the natural course of aging is much more unkind to me than the hepc so far.  I also have advanced liver disease and quite sure it impacts my health negatively.
Maybe I'm from the old school but just because I have hepc doesn't mean I'm entitled to assistance from the government. There's a difference between overwhelming side effects that absolutely stop you from living productively and those that are unpleasant. The government generally knows the difference between the two and as Magnum said, they don't hand money over easily.  Just because the option of disability is out there doesn't mean I want to pursue it.  If I was truly disabled as in unable to perform a job effectively then disability would be merited.  Until then, I'll take my happy a-ss to work everyday because it gives me a reason to get up and make the best out of my life.

However, a couple of months in the Mediterranean would do wonders for my high blood pressure, fatigue, no energy, depression, and anxiety.

Trinity
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Hi, I'm almost off to bed.  My sister was supposed to come over with her kids today but neverr even called me and she knows ofmy bloodwork resultsw and how despondent I am.
My significant other has been out all day and said "poor me" when  i toldhim (he was high on klonopin but that's NO excuse for his lack of empathy/compassion.  some people just suck i guess.  It's who you can count on when the chips are doewn taht matters.  Sorry about spelling.  Did you ever hear of anyone getting bad pains or do youj in the right hand side of your tummy, lilke across from you belly button but closer to your side?  For months now i've been getting stabbing pains there.  Ihaven't really eaten in 2 days besides hershey kisses.
Some days I just have no appetite.  How are you feeling today?  Thanks again for yeserday, you and Bill1954 made me feel alot less alone.  I'll be talking to you.  Going to try and find a hepatologist or gasterontoligist tommorrow.  I think I want to start treatment soon. take care, cindy
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Hi Cindy,

I'll send you PM.  There are in the top right corner where it says inbox.

Trinity
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Just for the record, I, too, had to go to Soc. Sec.'s doctors and their OWN DOCTORS wrote in their report that I was disabled, so it wasn't just me trying to buck the system.  That being said, there are many who do try that.

Susan400
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It seems like most people don't feel sick from hep c until they find out they have it, or they have advanced liver disease.
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If you get denied during the appeals process, after that you get a chance to go to court.  There will be attorney fees for gathering your medical records, whether you get approved or not.  It is a long road.  It may take a year or more to get approved....

They may ask for Dr's exams and Psychological evulautions too.  It is important to tell them about your fatigue or disabling symptoms.  

Spectda, so you think it's psychological once you know you have it you feel sick?
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Even being physically disabled it's extremely hard to push something like this through. You would need doctor after doctor and paper after paper to say that you were physically incapable of work.  I'm in my later 40s and have stage 3 and treated for 72 weeks after having the disease for around 25 years. I had some of the hardest sides you could possibly get yet still managed to come to work.

Now at 26 years old just from having HepC it would be almost absolutely impossible to get SSI just for having it.  It takes many years to fully manifest itself to the point where your liver would have degraded enough to cause real problems.

If you aren't even on treatment I can't imagine in this day and age any government agency would pass this through no matter how many lawyers you had on your side.  They'll save it for those who truly are incapacitated.

Sorry about that.

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I think we attribute more to hcv then we really get from it unless you have fairly advanced disease. It's hard to separate psychological from physical sometimes. Depression and anxiety from knowing you have the disease can certainly make a person feel physically sick. I think most people find out they have HCV from blood test that they had to take or screening, only some find out because they feel and are sick and have advanced liver disease. I personally don't want to cheat myself from living life to it's fullest because I have HCV.
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No one wants to be disabled obviously.  nygirl7 I actually agree with you.  It is rather difficult to get benefits unless your completely obliterated.  AND if you ARE ACTUALLY DISABLED, and have medical records to PROVE it they still may turn you down.  

I don't know if you read the website I posted, it tells you how to get benefits.  That's what were trying to figure out...  You have to speak with an attorney who has done Hepatitis C cases before and won.  

Like I said before, age does not play a big role, as a biopsy is the only way to determine how much progression you have...   In 20-30-40 years down the road you may become disabled if you've got Hepatitis C....  Now is the time to start thinking about that, otherwise you'll never get it.......  AND if you plan on going thru TX soon, or in the future now is the time to think ahead.  Figure out how to get it when that time comes..... As most people cannot work while going thru it...  Waking up everyday and going to work while going thru HEP C treatment is whats impossible to do.....
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I should have mentioned that my SSI disability has nothing to do with my Hep C. It is because of 13 surgeries I've undergone due to my Childhood Rheumatoid Arthritis that leaves me to work part time at best, and only under doctor's approval, and with very regulated work programs with a lot of guidelines and work reports to the Social Security Dept...

Magnum
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It took me years to get disability and I had broken my back and literally had a dent in my brain with was causing short term memory issues big time.  They finally gave it to me because of that - not my back. And I had VOLUMES of paperwork and expertise to stand on.

As tough as treatment was I just don't see them giving anyone long term disability for hep on it's own really - most people aren't even aware that they have the disease until their bloodwork accidentally shows that something is wrong.

It's hard to prove things like fibromalygia (fibromyalgia) and other issues, especially those that might be mental rather than physical (believe me I had to take all the tests because of my TBI).  And once they were resolved I went off disability and started to work again.  Disability doesn't pay enough to live on.....even when you have kids depending on you for their dinner.
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Actually it's not obvious that nobody wants to be disabled.  From what you post it sounds like that is exactly what you want.  And it is not true that most people cannot work during tx - many people do work going through treatment.

Why is it that you are so anxious to have people apply for benefits?  Who is the "we" trying to figure this out?  Really, you should concentrate on maintaining as many of your normal activities as possible during tx.

Trinity


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Thanks Trinity4, that's very helpful.  

All the advice is well taken.  Some people can handle working on treatment, others cannot.

No one wants to be disabled obviously, is what I said, PERIOD.  That's what I said, and I'm sticking to it.  Don't twist it around.  

The Goal here is to get a general idea about how to approved for benefits.  PERIOD.
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Really, you should concentrate on maintaining as many of your normal activities as possible during tx. "

Getting up and showered and dressed every day and coming in to work where I could have my mind taken off my situation and laugh with some friends once in a while is probably the thing that kept me SANE during treatment.  Wisest thing I ever did.
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I personally, don't enjoy the prejudice that I get from others for the fact that I made the decision to go on disability.  Excuse me, I worked for MANY years and paid into the system.  I didn't just go up and say, give me a hand out w/o putting in my time.  I started working at 16 yrs old.  I worked all the way up until I was in my 40's.  I struggled w/going on the disability.  It's hard to live on it.  It's even harder when people judge you.  I'm happy for those of you who are and were able to hold down your jobs, keep your jobs.  Try doing that through 10 treatments. Over and over again having to ask for time off from work for doctor's appt.'s, liver sono's, liver biopsies, labwork, clinical trials that want you there every week...., not to mention the side effects from doing 10 treatments.  I've had so many mental side effects, "lingering chemo brain" , etc., etc.  I WANT to be able to make more money than the poverty level wages that I get from our government, which excuse me, is less than $12,000 a yr.  I made hugely more than that when I was working.  I'm tired of trying to rationalize this....    You either understand my plight, or you don't..., that's totally up to you.  I'm the one that is having to live with my decision and believe me, it is not pretty!

Susan400
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I think it would be good if people were able to go on short term disability while doing tx if they needed it. Everyone responds differently from what I can see and depending on what kind of work you do it could be quite difficult to handle it while not functioning well. I also think if you paid into ssi for years, we have a right to use some of the money. For some I would guess that working or regular activity on some level would help get them through it.  I know you didn't start the thread looking for a debate, but I think the subject of disability seems to invite it!
Good luck, I hope you get it if you are going to try!
Dave
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Well said Susan. I'm losing a good chunk of money and have to turn down jobs in order to keep my SSI because any insurance company will not touch me with my existing physical problems. With SSI, I get Medicaid, which without, I would be in a wheelchair and broke with dust in my pockets.

The criticism is from those who don't understand. They don't necessarily mean to berate you or anyone receiving SSI, they're just confused as to the facts of why persons like you and I are eligible. I too worked for at least 40 year and paid into Social Security thousands of dollars and am deserving and glad I got SSI.

Funny thing, when the criticizers will one day need SSI, they will change their tune in a hurry... By the way, best of luck in your next treatment with PI's. The battle is not over, just on hold for a while...

Mag
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Everytime a discussion like this comes up you take offense.  No one was directing criticisms at you.  Your name was not mentioned and no one was alluding to you. Most everyone here knows your situation.

It was Cory's comments like:  "We've all got Hepatitis C.  Basically, Hep C is on the list of Digestive System List of Impairments.  You should automatically qualify.  I don't know why anyone wouldn't want to give this a shot. "

I'm sorry, but if read something like that I must express my opinion and it's not personal or a criticism.  I don't know who you feel you have to defend yourself to but it's certainly not me.

Trinity

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This is a Hepatitis C forum.  AND it is a fact that Hep C is on the list of impairments.  SS isn't for everyone, some people can work, others cannot.  

Once again, The Goal here is to try and figure out how to get approved for benefits.

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You tell 'em Cory

Magnum
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Whose goal Cory?  Those that need and deserve SSI or those that have hepc?
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Once again, The Goal here is to try and figure out how to get approved for benefits. "

May I please enquire as to why you feel you are disabled enough to get benefits?  I haven't seen any reason why you think you should be entitled to government assistance - for those who do need it, obviously it should be approved and generally is. That is why they make it so hard to receive it, they want to make sure it's not used like welfare - as a way of life but is indeed for those who are disabled and eligible.

Most folks who are just diagnosed with hepc didn't even know that they had it - it's a very symptomless disease for most people until very late in the liver damage progression - which I'd assume for someone so young you cannot yet have.
So i'm curious why you are so interested in this subject considering mosto people double your age are not?
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NO. nygirl7 that's getting a little bit too personal for anyone wanting to apply for benefits.

Why are you interested in knowing how?  Why do you feel you are disabled?
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My friend in FL says there has been a lot of Gator activity this year.

Trin
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Hepatitus C doesn't have to be a disability.  Some people are ok with it and don't even get treatment.
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Yes, that is exactly right Nygirl.  No one ever mentioned or made reference to Susan400 or Magnum.  Most everyone on this forum is familiar with their plight but I see no evidence of this DISCUSSION becoming an abuse contest now or prior to this post.

Trinity
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Let's stick to the topic, if it's even necessary to continue it.  It's ok to discuss in case someone needs it, but it's also good to know that most won't.

Those points have been made well, so no need to continue the back and forth.

Emily
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This is the website.

http://www.ssa.gov/ssi/

It may or may not apply to you.  Good Luck!
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