I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cherpep on August 18, 2008, 05:59:49 AM
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I currently work 9 hours Mon thru Fri at a job outside my home. I do home hemodialysis 5x/week. I am a wife and mother of 2 (ages 17 and 12). Although I feel much better now that I am doing home hemo, I often find myself exhausted. My doctor has suggested that I go on disability. This scares me, as I don't think I can afford it. I have used up all my sick time at work, and they frown upon my doctors appointments, or coming in late on those sick mornings. When I had surgery earlier this year for an emergency graft, they paid me out of my vacation pay. So, at Christmas time this year, I will have no paid time off. I work reeaallllll hard to maintain a normal appearance at work - but it is becoming increasingly difficult. Part time is not an option for me here. I have no degree, but currently have a good job making a very decent pay. My income is actually higher than my husband's. Once I leave the job, it would be very difficult to get another at this pay - I know because I have tried to find another job - impossible even before being diagnosed with CKF.
My doctor brings this up every time that I see him. As I dressed for work this morning, and found myself sick and dizzy, but pushing my way through it, I realized I cannot do this much longer. I need to at least investigate the disability option. So.... any suggestions? Does anyone have any suggestions on how I can get some information regarding Social Security? How much will I get paid, for how long? What it takes to claim disability? If you've ever gone through this and have some suggestions, I would really appreciate it. I haven't decided if I'll go that route, but I would at least like to know what to expect and examine our financials to see it we can make it.
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Here is the link to the Social Security Administration. http://www.socialsecurity.gov/applyfordisability/
It's a shame that so many out there use and abuse the system when there are some who have no choice. Hope this helps.
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You have considerable rights under the ADA. You should investigate them. Check out the EEOC website. The employer has to make "reasonable accomodation" for you. That, of course, means many things. I found that on the east coast it really means more than here in Texas where the corporations run make the rules. But, sometimes us poor working stiffs do get a break.
-Devon
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My son was on disability. He did not make harley any money because he was 19 when he got it. Mind you he was a kid. Did not have a long work history. They base it on how many years you have worked. My brother in law makes decent money from his stroke that left him handicapped.
I called SSI and you can file ONLINE for disabilty. You will go to a DR that they want you to see. Dustin filed and this was BEFORE dialysis so yours would go quicker compared to others. I think it was like 6 mths before we heard. Like I said you would probably get it alot quicker.
Dustin also got Medicaid. Who could move out on $432.00 a month that was a joke. He lived with us and YES we helped him. Poor kid didnt have a pot to pee in!
Hope this helps.
Lori/Indiana
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Do you receive the Social Security statements they send yearly (I think it is yearly)? It tells you how many points you've earned, what your SS would be at retirement and what your disbility would be. I think you can get all that info online also. I applied online, with ESRD you would be approved. Mine was very fast, less than 3 months. You have to sign many copies to give them the right to contact your doctor's ect. My payments are smaller than my paycheck was, but I spend no money on gas, work clothes, lunches out,etc. That being said, I miss my job terribly. Not an easy decision, but you have to take care of yourself and do the best for you and your family. I'm sorry you have to deal with all of this. :grouphug;
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As mentioned before go to SS website and will give you more info. .
I have been on SSI since 2002 (before kidney failure I got cancer ) my job offered me a package to retirement (they have a long term disablity program) see if you company offers this as in long run you get more money..
Plus remember if you go on Social Security you can also claim your chlldren.. (not sure if it is until 18 or out of school) but that is additional money I beleive your husband can be claimed also ..In long run it is for the better ..you will miss going to work but when you have bad days you will be glad you dont have to feel guilty calling out of work again..
Best of luck in whatever decsion you choose
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I can just tell you about myself..it just so happens that about 10 years ago the district was offering anyone disability with no medical test involved-I knew I had pkd so I signed up and it was a little expensive, I think an additional $90.00 a month out of my check. It was well worth it. I get
about as much as I made working, for a few years and then it goes down. I could not work part time in teaching b/c whatever I made would be subtracted from my disability..I have to prove I am still disabled every year, which is easy. The company called me and wanted to know if I was over my kidney problems-------- NO..... I felt too tired to do anything and taught 7th & 8th graders and did twirling classes.....plus I have three children all in sports and activities.... my doctor felt the same as yours... but then he is a millionaire------ not the same thing-----I would get dizzy and have to go to the clinic. It was horrible being in class and having to time restroom visits between classes---- if I did not have hall duty that period-- I went to dialysis MWF from 4:30 until about 9pm. I hate not working but I do not know how I ever did it while on dialysis.
I had used all my days but at least I had summer time and spring break and Christmas..... that did help.....I miss teaching and can not drive by that side of town or I start crying---- today is the first day teacher's go to meetings and out to lunch and I miss it so much.
sounds like disability may be a good thing for you especially with two children at home but the money is less and that is hard to adjust too- plus now we have Bubba at Texas A&M - he got a lot of help but we still have to pay his rent---500/month- thank God Allen has good grades -
I am thinking I bring home about as much as I brought home before disability but I am not thinking of all the money I had put in different accounts before I even saw it----- all that is over!
I know how bad you can feel and you never know how you will feel during the day
just b/c you start the morning feeling okay does not mean you will stay that way
some teachers were upset that I did not have afternoon bus duty
but I got there and hour early and had duty on the high school side
then three nights I was a D until after 9
if you are going to be jealous of me be jealous b/c I was a very popular and well like teacher
not b/c I am on dialysis and leave a little early three days
if you can adjust to your salary being lower - it may be the best thing for you
I know how tired and how you feel
I wish you the best
plus ----- you look like a kid yourself
I can not believe your children are as old as they are
you look like the kid
:waving;
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I am an ex- teacher on long-term disability, like Twirl.
Thank goodness the teacher's union has good benefits, even if the pay is lousy.
I receive about 3/4 of my low paying salary. Check with the benefits coordinator at your work to find out what you need to know about disability through your employer.
Social Security will likely kick in once all your benefits at work are exhausted. Don't let your employer "push you out" because you have become inconvenient to them. By law they must accommodate your health needs. First pursue every avenue you have through your employer since they may have good benefits. Don't feel bad about the issue of disability. Your health is paramount. If your doctor keeps suggesting disability to you, it's time to listen.
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I agree with Sunny :2thumbsup;
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Are you currently covered by your company's health insurance? Would any care or cost change if you were solely covered by Medicare (if you leave your job?)
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With work, I have no short term disability. My long term disability would kick in after 1 year. I'm trying to find out how much that will be, and for how long without raising too many questions in HR. I don't want them to get wind that I might go on disability until I make the decision. My husband works for the same company, so I would still be covered under his health insurance until Medicare completely kicks in. I'm currently covered under Medicare for secondary coverage.
I checked out the Social Security website and found where I can order my statement to determine how much I've got paid in. I've been working since high school, so I hopefully will be in decent shape. I read all the faq's and whatnot and it seems I am definitely eligible. I just have to figure out the financial stuff.
Do I have to be off work for a while before claiming disability? Or is this something I can claim saying that I will be quitting due to disability? Anyone know the answer?
Thanks again for all your help. Twirl - Thank you very much for sharing your story, and believe me I'm not a kid. Thanks for the compliment, though. You made my day. This is all very helpful and is giving me the stuff I need to think about. keep 'em coming!!
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Your Doctor is supposed to fill out a disability slip indicating the extent, reasons, and circumstances of your disability. You submit it to your employer and they likely will have some paperwork for you to process. Make sure you go through the correct process so you are not left high and dry. From there, the ball gets rolling.Maintain a file at home with all of your paperwork for reference. Good luck.
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I hope you can figure all this out. I'm not sure about your local SS office, but we found that our local office was very helpful. They tried to put Stephen on disability after he started dialysis, but since his intent was to go back to work after the transplant, he told them that he did not want apply. The woman we met with answered all our questions, reviewed his work history and told him what he would likely be eligible for in the future if he has any problems down the road. I think the hardest part was finding the phone number to make an appointment.
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also not sure what state you are in but some states seem to deny claims more than others. .(In hopes of not pursuing) this happened to me even though I qualified on several levels..I had to get a lawyer and go to court. .
soon as I walked in with my boxes of medical reports the judge said this is a waste of time you shoudl have been approved ..I also was applying at 32yrs old which I think played a part.. So just be prepared to be your own advocate if you move forward
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Social Security Disability is pretty much automatic once you start dialysis. If you aren't on dialysis,you may need an attorney. Fortunately I have my state retirement plus disability.
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You also have to realize there is a 5 month waiting period from the date of disability. That will be the last day you are able to work. So-- you will have six month of no income before you get social security disability, and a year before you are eligible for long term disability.
Hey- guess what the leading cause of Bankruptcies in the US is.
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leading cause of bankruptcies in US is cost of gas
my school disrict paid me salary on some kind of decreased amounts until disability came along
but it was not too long
I had been paying for the disabilty for years and it was not cheap
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You also have to realize there is a 5 month waiting period from the date of disability. That will be the last day you are able to work. So-- you will have six month of no income before you get social security disability, and a year before you are eligible for long term disability.
Hey- guess what the leading cause of Bankruptcies in the US is.
Wow!! 5 months!! That's what I was afraid of. I would have no income for 5 months during that waiting period, my company does not give any short term disability. I could absolutely not survive that. YIKES!!
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I believe you get the 5 months retroactively in your first check. I am not sure, but i think that's what Jenna got. She gets $600.00 per month. She had never worked but since she was 18 years old they based it on my salary (and I haven't worked since she was born) so you would get more than that I hope!
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I did not wait for 5 months
please find out your exact situation
and maybe where you could go to get help if you think you are not being treated fairly
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I didnt have to wait 5 months either but it had to do with my job and their benefits..Somehow I had to use my family leave days and when that was all used up I was able to go on SSI ...however, I got paid family leave it was awhile ago so I really dont remember how it worked...sorry
Hope you are able to work it out
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There are Federal Guidelines that employers have to follow..check on FMLA with your employer..it is in place to keep your position for a period of time which should also give you enough time to work on your personal medical issues as we all know dialysis is a job all by itself. Someone else mentioned ADA as well.
Ann
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No, you don't get the five months. Once your official date of disability is established, it is five months until payments start. I got some retroactive payments but they started with the 6th month after the date that Social Security determined that I was permanently disabled.
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I just checked my paperwork it seems my job paid me long term disabiltiy when I left..Then SS began 5 months later ..Once SS began paying my LTD amount was dropped so I can not get more then 66 2/3 of my salary between the 2...I would check with your benefits I never was without money coming in >> I just lost 33 1/4 of my salary which is now made up with my kids benefits
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My company definitely has no coverage for the short-term 5 months. No income during that time would be a terrible hardship for my family to endure. There is no way I could do that to them. We would not be able to make the house payment, let alone consider a medical bill, which are plentiful because of me. Reduced income is one thing, but no income is impossible.
How does this make sense? If you are disabled and unable to work, no chance to earn an income, why would they automatically make you wait 5 months before helping you out? What does that waiting period do? I guess it makes it less desirable to those who might fake it, but it is just cruel to those of us who need it. I feel like there's no hope.
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A good friend of ours has MS and it took several turn downs to finally receive disability and they went back one year to onset. The guidelines only allow them to go back 12 months. She received her first check and it was $28000.00. This was just last winter.
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Similar to my experience. SS decided I qualified as disabled two years before I applied. They paid me back payments for the past twelve months and then the checks started the next month. I started the process at the end of April, got the back payment in July. Thank you, thank you!! What a relief :thumbup;
Let us know what you decide to do. It is not an easy decision.
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Some hope- you may get your date of disability set as the day you had to go on Dialysis, rather than the day you stop working.
Worth a shot.
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:twocents;
When my prev husband had his heart attack the Dr had him apply for disab and then a month later they had to amputate a foot and we had waited for just over 2 mo with no ans, called and no ans, you know and all we had was my check for medication and bills and we were sinking....it was an election year so I sent emails to each person in our state and county running for senate or whatever and within 2 weeks he had his first check including his back pay. Sometimes it helps to rattle a few cages.
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Here is the online link http://www.socialsecurity.gov/applyfordisability/ - be sure to say you have ESRD requiring permanent dialysis