tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I started receiving disability about 6 mos. ago. Ever since, I have this fear that they may try to take it away at some point. Does anyone know how that all works?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
You must have received a letter stating the date they determined your disability started and when you would be put up for review. The review timetable is based on age and likelyhood of improvement of your condition.
They cannot change anything before that time
Posts: 130 | From Central NY | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Laura, I also have this fear sometimes. I have been on disability now for about 8 years. I am fortunate that I've been supported through this process.
I worry my doctor will drop Medicare (He did), I worry he might turn on me if I don't get well on his timetable (He did), I worry........
Our worries are justified sadly, but on this issue, I'm ok for now.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Social Security conducts "reviews" periodically to determine if someone is still disabled.
They often run behind on these. But i did hear recently that the Obama admin was putting some extra bucks out there for reviews to help cut down on fraud.
The frequency of these reviews will depend on your age and the nature of your impairment. The younger you are and the more potential for improvement of your condition will determine the frequency.
The best thing you can do is keep visiting your doctor at routine intervals and make absolutely sure your doctor puts plenty of statements in your records about your functioning. Don't hesitate to take a list of functional statements to doctors' appointments to ask that statements like this be included. When you are reviewed, your case will already be made for you, which will cut down the risk of a cessation of benefits.
If benefits were cut, you would be able to appeal. But best not to go there ...
Posts: 2276 | From NC | Registered: Oct 2000
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I don't remember receiving a letter about when I'd be up for review. The doctor that helped the most with me getting it is no longer treating so I don't know what will happen if I get reviewed.
Michael, have you been reviewed? If so, what is involved and is it as stressful as trying to get SSDI in the first place? Also, how is your treatment going? Hoping to hear good things from you about it! You deserve it!
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Connie,
Thanks for that info. I will definitely start requesting that info be included in my file. My current Lyme doc ignored all requests from me and SSDI for information. I have to keep this doc b/c they accept insurance. I have a new integrative doc that will hopefully support me.
Posts: 2541 | From Northeast | Registered: Jan 2008
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi,I have the same worry, however on my determination report it says 5 to 7 years.
In 7 years I will be 62 and could retire in 6 months anyway.
I cant go to any doctors untill i get my medicare in 11 more months.
I am taking aquarium antibiotics,and shooting up cattle pennicilan when needed.
WAITING 2 years for medicare is terrible.
MADDOG
Posts: 4000 | From Ohio | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
No doctors for a year doesn't sound right, Maddog. Anyone you can check with in your area? You should be able to get Medicaid, no?
posted
They won't LET you go to a doctor? or won't PAY for one? Sure hope you get the care you need!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yes it can. i've actually heard of cases where somebody calls in and says "oh so and so was doing this and doing that, you ought to do something." and they were investigated and lost their disability.
so please be careful. if somebody sees you out running around, mowing the yard, or moving or doing anything, you don't know who will call and complain, so be careful about discussing this with people.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Preface, I'm just a spouse. My wife has Chronic Lymes. However, I have been recieving ssdi for "Hep C" for almost 11 years. My doc, wrote letter for ssdi that stated "Prognosis poor if he does not respond to treatment for chronic psorosis/hep c." I recieved ssdi immediatly (6 month normal waiting period). Have had one review since. My treatment failed, was supposed to "pass on" 9 years ago, as "prognosis poor" interpets to never recoverying.
They can take ssdi away if you recover, or if you work a certain amount of hours on the books and have taxes taken out. If you do either, you won't want it anyway.
Don't be worrying 'bout looking over your shoulder. The goverment got bigger fish to fry. I make extra jing playing guitar in coffee houses and bars with a tip jar...And its been workin' out so far. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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posted
Hi again. Pam my wife, recieved ssdi for Fybromyalsia 5 years ago. At the time she had to wait 2 years and the judge actually granted the ssdi as "fibro" didn't exist. The judges orders went into her med records. She is only reviewed by her Long Term disability company Humana. She writes short report, and tells them to refer to doc.
No problems. Make sure your med records from previous doc are forwarded and you can always get a copy of your original note to ssdi from your med records. I keep mine framed!!!
It always turns out alright, just keep on believing
Bobby
Posts: 24 | From Vermont | Registered: May 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
bob, i'm sorry but i do disagree with you.
i worked in civil rights for many years and have seen the investigations come through.
in fact, our friend, floyd was put on disability and had to be verified every 3-4 years until he reached a certain age.
i could go through several cases but i won't. the individual offices in the cities receive these phone calls. it is not the "entire federal government" that you may be fighting. it could be your local office.
and people do call and complain. please believe me they do.
all i'm saying is not to discuss your disability with neighbors, people who you are not close to, etc. prudence is best when dealing with "invisible" illnesses such as lyme and fibro.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Randi, you may very well be right. I try to post what my expierance has been. I tell everybody I know of my disability, sorta a respocibility as it can be passed by blood to blood contact, and also the coping skills developed that keep me going. Pams the same way, only with the Lymes, we offer the DVD as to further their understanding, besides, investigators in VT have probably found that hiding in bushes or filming folks from their car is not a very good way to keep from getting mistaken as a sex offender or shot after being mistaken as a deer...Woops!
We try to both make our disabilities Known (not silent) and to educate at the same time. Aids was once a silent disease, but I bet if someone called in now to claim some one was faking it, the civil rights folks would be suing the heck out of person making the false accustations.
I believe if you are diagnosed and honestly reporting your symptoms, theres no need to worry.
If I were to live according to the criteria set by disability board, I would have to sit/stand/switch positions every 9 mins, not even be able to pick up my laptop, drive without getting lost at every turn, or be able to remember my way back, (can be confused as just being a dude that has never asked directions any way, LOL)
I agree with you, every where is different. As folks learn to cope with thier particular disabilites (our next home will not have stairs, and we have railings in our bathtub), I also still perform with my guitar, sometimes standing, some sitting, napping 2 hours ahead of time, and sleeping 12 hours after, stomping my feet to the beat to counter the neuropothy, and sometimes making up lines as I go.
My doc congradulates me, and checks out my You tube site, and investigators can do the same. But it doesn't change my diagnosis, and I'm not afraid to shout out loud, "I'm beating the devil" and surviving, and if you have what I got, I can help you too. Same for partners with Lymes. Lets change it from being a silent disease...Just watch out for that "Tax Man"...
Bobby
Posts: 24 | From Vermont | Registered: May 2010
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Well,my neighbors all know about my disabilitys,and I won my SS.
However they all have seen me having severe tourett ticks.
They have seen me sliding things up and down boards because i cant lift things.
They have seen me using a block and tackle with the rope hooked to the bumper of my truck to move things that normal people would just pick up.
They have been there when I was lyme rageing out of control beating the ground with a broom handle and yelling insanely.
They just know I need the disability.
MADDOG
Posts: 4000 | From Ohio | Registered: Oct 2000
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posted
oh randibear! you are so right. " all i'm saying is not to discuss your disability with neighbors, people who you are not close to, etc. prudence is best when dealing with "invisible" illnesses such as lyme and fibro."
we need to be careful and protect ourselves from people that don't understand our "invisible" diseases. it is sad to think that people don't understand us and some will think we are trying to get over on the sys
Posts: 3 | From tampa fl | Registered: Apr 2010
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people will and do think we are trying to get over on the system. if we had crutches, were bald, walked with a cane - perhaps they'd be sympathetic but i wouldn't could on it. those people get better in a few months, we do not. for some people our disability income is all we have to pay our doctors and medicine. without that we'd all be homeless.
Posts: 3 | From tampa fl | Registered: Apr 2010
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
my ssdi review was supposed to be 3 years after i first began receiving benefits.
i'm pretty sure i've already crossed the 3 year mark, and i haven't heard anything from anyone about it.
i agree with Randi to be careful about maintaining your privacy on this (a good general principal anyway), but I think in my state, anyway, unless recovery is at hand ssdi renewal is pretty automatic.
--D
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yeah, the privacy issue is a massive thing with Lyme. Most of us are too sick to be able to care about making our disease well known among our local neighborhood.
Most of us still educate everyone though. People gossip too. So if one knows, it can spread like a disease (No pun intended).
One day I can be out washing my car and looking healthy, the next, I can't even leave my bed room. The lack of understanding is mind blowing. Do you really think someone -- even if they stay well a month, and then get sick again, could hold a steady job?
No way. Even those of us who get better know better than to cut our disability off. Here is the typical senario of the naive.
Get very sick Get disability via LTD or SSI Get better Go back to work Lose SSI Relapse Attempt to get LTD or SSI Rejected Appeal Rejected Appeal Rejected Hire lawyere Get disability via SSI Lesson Learned
It happens far too often. Worse, being turned in by a neighbor or even someone you think is your friend. Try to get SSI after being found guilt of fraud. They may slap you on the wrist and take your SSI away, but when you try to reapply, they know who you are. Rejection is certain.
Keep your privacy with Lyme, the risk is too great. That's my opinion. I've learned that a lot of people are very cruel. They can and do turn on patients.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i also speak from personal experience. i applied to have my life insurance increased and had to take a physical.
this idiot doctor told them (and to this day i don't know how it happened but the insurance company says he did and i believe them) that i was suicidal, a hypochrondriac, etc.
needless to say they cancelled my entire policy including any increases. i never got my life insurance back. all i have is the government policy which reduces every year and that bottoms out at about 1500 bucks, not much.
so believe me, you never know where it's going to come from or from whom.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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