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Author Topic: Anyone Kicked Off Of SSDI?  (Read 10015 times)

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Offline PozitivelyColorado

  • Member
  • Posts: 6
Anyone Kicked Off Of SSDI?
« on: August 01, 2007, 10:21:59 AM »
After reading Dan J.'s problem with the SSDI tit, I've got some questions.  I've also been on SSDI since 2003 and my time with the tit is not quite over.  I still need it for a little while.  But Social Security might not agree as I'm up for a periodic evaluation in the next 90 days.  Has this happened to you? What's it like?  Are they as tough on renewal as they were in the initial application for it?  I was practically living on the street in those days and would like to avoid the experience happening again.  Your experiences whatever they have been would be more than useful.

Thanks in advance.

Offline dixieman

  • Member
  • Posts: 889
Re: Anyone Kicked Off Of SSDI?
« Reply #1 on: August 01, 2007, 10:51:21 AM »
I personally have not been on ssdi but, I know of several people who have been cut and had to return to work. I have also known others who never lived long enough to recieve their ssdi for its a drawn out process... With the new meds etc... haart one will find it difficult to remain on ssdi for long periods... with the cutting and limitations of funding it would be the last alternative... I also know of several people trying to return to work and finding it diffcult to find gainful employment... Hopefully someone else will have more insight on this matter...

Dan J.

  • Guest
Re: Anyone Kicked Off Of SSDI?
« Reply #2 on: August 01, 2007, 11:04:22 AM »
I was reading the SSI website last night. I am due for my review sometime this year also. I will go back & look for the page & post a link here. I don't have time right now I have a Doctors appointment.

Be back later...

Dan

Offline Miss Philicia

  • Member
  • Posts: 24,082
  • celebrity poster, faker & poser
Re: Anyone Kicked Off Of SSDI?
« Reply #3 on: August 01, 2007, 11:16:11 AM »
PozitivelyColorado, I'm sure it can vary from office to office with renewals.  I recall researching all of this 2 years ago and it was helpful to know what type of renewal form you were issued.  I recall there being 2-3 possibilities.  I eventually went to my case manager (one at my doctor's office, not the local ASO) and he assisted me and there were no issues.

Here's an article from 2000 in The Body, sorry it's not more current.

http://www.thebody.com/content/art32748.html
"I’ve slept with enough men to know that I’m not gay"

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: Anyone Kicked Off Of SSDI?
« Reply #4 on: August 01, 2007, 11:19:14 AM »
I have been on SSDI since 2002 and I'm sure they have done their review or whatever but I have never been notified about it. I will say not that I can remember.... ;D
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Dan J.

  • Guest
Re: Anyone Kicked Off Of SSDI?
« Reply #5 on: August 01, 2007, 11:20:33 AM »
Reviewing your medical condition All people receiving disability benefits must have their medical conditions reviewed from time to time. Your benefits will continue unless there is strong proof that your condition has improved medically and that you are able to return to work.

Frequency of reviews
How often your medical condition is reviewed depends on how severe it is and the likelihood it will improve. Your award notice tells you when you can expect your first review.

Medical improvement expected—if your condition is expected to improve within a specific time, your first review will be six to 18 months after you ­started getting disability benefits.
Improvement possible—if improvement in your medical condition is possible, your case will be reviewed about every three years.
Improvement not expected—if your medical condition is unlikely to improve, your case will be reviewed only about once every five to seven years.
What happens during a review?
We will send you a letter telling you that we are conducting a review. Soon after that, someone from your local Social Security office will contact you to explain the review process and your appeal rights. The Social Security representative will ask you to provide information about your medical treatment and any work that you may have done.

A team consisting of a disability examiner and a doctor will review your file and request your medical reports. You may be asked to have a special examination. We will pay for the examination and some of your transportation costs.

When a decision is made, we will send you a letter. If we decide that you still are disabled, your benefits will continue.

If we decide you no longer are disabled and you ­disagree, you can file an appeal. If you decide not to appeal the decision, your benefits will stop three months after we decide that your disability ended.

For more information, ask us for a copy of Your Right To Question The Decision To Stop Your Disability Benefits (Publication No. 05-10090).

 http://www.ssa.gov/pubs/10153.html#part2

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Anyone Kicked Off Of SSDI?
« Reply #6 on: August 01, 2007, 11:21:58 AM »
Queen, each individual has differing review status.  It should be mentioned in your initial award letter. 
"I’ve slept with enough men to know that I’m not gay"

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Anyone Kicked Off Of SSDI?
« Reply #7 on: August 01, 2007, 11:34:56 AM »
After reading Dan's post that does sound familiar. I would have to go through a lot of stuff to find that award letter.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline PozitivelyColorado

  • Member
  • Posts: 6
Re: Anyone Kicked Off Of SSDI?
« Reply #8 on: August 01, 2007, 02:25:41 PM »
Thank you all for your replies so far.  I couldn't help noticing that none of you have been KICKED OFF.  You have your experiences and information, but not kicked off.  That's an answer in itself, I guess.   

I have a little less trouble with SSDI than some of you, it sounds like.  That's probably because my life already sucked so bad that this is just more of the same.  My situation is the kind that seems to be reviewed about every three years.  The letter I received has questions about my most recent doctor visits and any work or training I've done in the last two years.  I had to return that to them.  It doesn't say there's going to be a medical review, it says they're considering it.  I'm hoping with this thread to get a feel for how tough they are on AIDS patients, since I just can't tell. I have not worked and getting back to it would be, well, ugly.

Anyway, thanks for the quick replies.  I will be back looking for other encounters some of you have had with Social Security...

Dan J.

  • Guest
Re: Anyone Kicked Off Of SSDI?
« Reply #9 on: August 01, 2007, 02:50:26 PM »
Go to this link, Social Security For People Living With HIV/AIDS.

http://www.ssa.gov/pubs/10019.html

Offline JR Gabbard

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  • Member
  • Posts: 257
  • Union Jacks
Re: Anyone Kicked Off Of SSDI?
« Reply #10 on: August 01, 2007, 09:41:42 PM »
The only people I've seen kicked off SSDI are the people who blew it off, and figured it out when the checks stopped coming (or the direct deposits).  It's usually pretty easy to get them back on IF you can show that they have been following treatment, or at least seeing a doc.

Continuing Disability Review (CDR) --thanks for posting that, Dan J.

SSA will notify you when it is time, but it is usually noted on your initial award letter.  Calculate the dates from there.  Most people with AIDS are at 5-7 year intervals.  That's because medical improvement is not expected--meaning there's no cure.  Your disability decision was based on the degree of damage your immune system has suffered--measured by various OIs, hospitalizations, concurrents diagnoses, and the "little" stuff like nausea, vomitting, diarrhea, fatigue etc.  You will get to submit your med records, jsut like the first time.  They may ask for an exam--you have a right to have your own doc do it.

Make sure your doc makes chart notes of your subjective symptioms--fatigue, depression, etc.--because they will be important at this stage of things.

I can't answer any questions about specific cases here, so if you have a question you would like me to answer about your own situation, send me a PM.  I'll try.

JR
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline dixieman

  • Member
  • Posts: 889
Re: Anyone Kicked Off Of SSDI?
« Reply #11 on: August 02, 2007, 10:41:00 AM »
I spoke with someone at the Health Insurance Board in Alabama... and since aids is now considered a chronic condition... and not a terminal condition... and with the new medications available... it is now becoming more difficult to recieve ssdi... or long term disability... meaning the reviews will probally become yearly in the near future...

not too long ago in the late 80's and early 90's if you were hiv+ you automatically were classified as terminal but, it has now been evaluated as a manageable... chronic condition... its really something to think about with all the medical advances being made... 

Offline RapidRod

  • Member
  • Posts: 15,288
Re: Anyone Kicked Off Of SSDI?
« Reply #12 on: August 02, 2007, 12:18:28 PM »
All my paperwork was filled out by Social Services at the hospital and filed on my behalf. It says, "Chronic and permit disabled." I started receiving SSI benefits within a month and a half, plus retropay and received my medical card and food stamps the day I was released from the hospital. I still get calls from Columbus advising me of all the programs I'm able receive help from that I have not filed for. I have no complaints about the treatment and help that I have been given. Knock on wood.

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Anyone Kicked Off Of SSDI?
« Reply #13 on: August 04, 2007, 07:16:21 AM »
my private disability plan, which was paying me for 6 years, just dropped me. I had to hire a lawyer to fight it....My ssdi is up for review next year, as that will be the 8th years. I'm sure ill get the boot there too, but im going down fighting. We shall see.
Positive since 1985

Offline ademas

  • Member
  • Posts: 1,151
Re: Anyone Kicked Off Of SSDI?
« Reply #14 on: August 04, 2007, 10:30:04 AM »
I'm not sure if I've been reviewed.

They sent me a letter in March '06 asking me to fill out a lengthy Work Activity Report (which I did), and then another letter in Juy '06 telling me that "We have recently reviewed the evidence in your Social Security disability claim and found that your disability is continuing."

It seemed more about income and work activity than anything medical (unless they accessed my Medicare records without my knowledge).  In fact, I don't recall any medical questions at all.

edited to add:  I know it says they reviewed my claim, but it just seems weird that it seemed entirely about the Work Activity Report.

« Last Edit: August 04, 2007, 10:39:40 AM by ademas »

Offline JR Gabbard

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  • Union Jacks
Re: Anyone Kicked Off Of SSDI?
« Reply #15 on: August 05, 2007, 08:20:45 PM »

 I know it says they reviewed my claim, but it just seems weird that it seemed entirely about the Work Activity Report.



For all practical purposes, once you have an SSDI disability determination, you are totally and permanently disabled.  The only factor that affects your continuing eligibility for SSDI is whether you are actually working and earning more than $860 per month (SGA).  That's why they used to lead with the Work report.  If you're not working, your disability continues.  If you are working, they check your medical eligibility.

If you do return to work, you will still draw your regular benefit for 12 months (9 TWP + 3 grace).  For the next 3 years, you are eligible for your benefit for any month in which you do not earn SGA (substantial gainful activity, currently ~$860).  All you have to do is let 'em know.

Furthermore, ( ;D ), during the first 5 years after you return to work, if you become too sick to work due to the same condition (HIV infection), all you have to do is submit a special application--no medical review.  They used to call it Easy-on.

It works this way because your disabling condition is HIV infection.  The infection must have seriously damaged your immune system, as shown by the symptoms you have, and OIs you've had.  But, the OIs are not the disabling condition, the underlying HIV infection is; so recovering from an OI does not change your status to "no longer disabled."  Neither does an undetectable VL and rising CD4 count, since you are still at risk of new OIs.

It is nearly a certainty that your physician either does not know this, does not get this, or does not accept this.  It falls to you to insist that they get it right.  HIV infection is the disabiling condition, not the OIs.

Physicians also don't understand that there is a difference between a medical diagnosis of "disabled," and a legal determination that one is disabled and entitled to benefits.  They absolutely determine the former.  But their contribution to the legal determination is in making a good diagnosis, and ordering the right tests.  Their negative opinion is sometimes considered, but it can usually be argued against if the facts support disability.  Docs are given deference, but it is a far cry from the treatment they receive within their own community (clinics and hospitals).  They don't get it, and they don't want to hear it. 

So you have to stick up for yourself.  If you aren't working, you need to be on benefits.  If you are working, you don't need them any more.  If your doc doesn't support this, why not?  Does s/he have your best interest in mind?

It is very frustrating for me personally, because the last 5 docs I've seen got sacked (by me) for some various display of stupidity or ignorance regarding AIDS disability (which complicated my access to needed benefits), and professionally because I see the damage that is done to folks when benefits are lost.

The above applies to SSDI only.  SSI has different rules on when you are disabled.  LTDs vary with each particular policy. 

Since everything after "Physicians" a couple of paragraphs back is a complete hijack of this thread, I have copied and posted this onto my blog (link below).  If you want to respond to the "My doctor doesn't get it" idea, please don't hijack this  thread--you can comment there, or start a new thread. 
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline J.R.E.

  • Member
  • Posts: 7,153
  • Joined Dec-2003 Living positive, since 1985.
Re: Anyone Kicked Off Of SSDI?
« Reply #16 on: August 05, 2007, 08:44:27 PM »
Thanks for starting this thread. It's been very informative, and thanks gabbardjr, for you input .
 I learned a little more tonight !!


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline randym431

  • Member
  • Posts: 1,125
Re: Anyone Kicked Off Of SSDI?
« Reply #17 on: August 06, 2007, 09:47:26 AM »
Yes!!! A very good thread. I always thought it would be nice to "retire" with things still going good, on the meds. Guess thats out...
As to change in the future for people doing well on the meds and SDI, guess it all depends on who is elected in 2008, in part at least.
Talk about a double edged sword.
I have done excellent on meds, and actually feel better than I did before hiv in the first place (go figure).
Numbers are as a "normal" person in the last checks and I switched to ever four months now (from three month checks).
The doc said whats the point, and saves me a little on out of pocket co-pays. I'm even thinking every 6 months, if I can get them to agree. Why not?
And all too often, I just wish these meds would have been available to so many that never had them as an option. I'd LOVE to have a time machine.

 


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