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Author Topic: Just started SSDI Process & very scared.  (Read 3429 times)

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Offline Bravo

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Just started SSDI Process & very scared.
« on: June 30, 2013, 03:41:48 PM »
I've been lurking for over a year and finally decided to register. Shout-out to all the wonderful members on this forum. I was first diagnosed in 2002 with CD count 38 and my CD Count has not seen any significant improvement. Within the last 12 years my CD4 has ranged from 100 - 250. It just recently dropped to 200, with viral load of 50. I'm really struggling with a lot of health issues, recurring genital herpes, Thrombocytopenia, HTN, chronic fatigue, dizziness, muscle pain, depression lack of concentration etc.  Applied for SSDI just two months ago and was told by the SS agent that I have enough credit despite being out of work for 3yrs. I  did informed my ID doctor in Feb that I wanted to apply for disability. He was not really impressed but promised to help. Handed him form SSA-4814 and he promised to sign but it's been over 2 months now and nothing done. My Attorney also sent him some forms to sign but nothing has been done. I'v seen him 4 times within last 6 months and each time he has diagnosed something new. He also showed me the medical request from SSA but he still has not forwarded my records. I know his practice is very busy but I'm not also sure he really want to help me.  Over the years, my treatment was at the local health department which mostly based on blood work and med. No proper documentation. So February 12, 2012, I started seeing my current ID and was amazed and happy that he documented all my issues and gave me a couple of referrals. I had to see surgeon for a cyst removal and and I'm also pcurrently seeing a Hematologist for my Chronic Thrombocytepenia. So overall, my ID Doc has really helped but I'm still not sure why he is so slow with SSDI forms.  Last month, I also collected all my medical records from my ID Doc and the Local Health Dept and handed everything to my Attorney. My Attorney submitted all the records to the DDS Examiner. I also had submit a Work History Report and a Function Disability Report which was very difficult to complete. Will sincerely, welcome any advice from members of this forum. Wow!!! Sorry for my long introduction and rambling. I'm exhausted and completely burnt-out.  More next time...

Offline darryaz

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Re: Just started SSDI Process & very scared.
« Reply #1 on: June 30, 2013, 04:11:14 PM »
Check with your attorney, but I'm fairly certain that when the SSA makes a request for information from your physician it is NOT OPTIONAL.  I believe your doctor is breaking the law if he is not responding in a timely manner.


Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #2 on: June 30, 2013, 10:31:49 PM »
Thanks a lot Darryaz. I'll discuss this with my Attorney.
I read a lot of discouraging stories on this forum about the disability process and how SSA  denies almost all new claims related Hiv/Aids disability.  So what do they really want? What are are the Hiv/Aids conditions that SSA want us to meet? How long is the process? I'm really scared and terrified.

Offline darryaz

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Re: Just started SSDI Process & very scared.
« Reply #3 on: July 01, 2013, 12:17:41 AM »
By itself, HIV does not qualify a person for SSDI as these days it is considered a manageable illness.  So you would do well to focus on the specific physical, mental or cognitive conditions that were CAUSED BY either HIV or its treatment and that prevent you from being able to work.  In my case it was NOT the HIV that gained me approval, it was the cognitive and memory deficits caused by a combination of meningitis and brain surgery.  The meningitis was a result of a "disseminated fungal infection secondary to HIV/AIDS" (i.e. my immune system sucked and I caught a nasty bug).

Here's a link to where I've listed a couple of "lessons learned" from my experience with going through the application process:
http://forums.poz.com/index.php?topic=44912.msg592815#msg592815

As far as the length of the process, it varies by state.  The SSA contracts with the individual states to manage the approval process.  Some states are quite strict whereas others make it fairly easy to receive SSDI approval.  Generally the "horror stories" you have read about here on the forum are from people in some of the strictest states.
« Last Edit: July 01, 2013, 12:27:25 AM by darryaz »

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #4 on: July 01, 2013, 10:22:12 PM »
Thanks for the link and tips Darryas. Your help is greatly appreciated.

Offline OneTampa

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Re: Just started SSDI Process & very scared.
« Reply #5 on: July 02, 2013, 10:45:54 PM »
Hello Bravo,

Although I can offer no additional advise from what Darry posted, I want to welcome you to the Boards and wish you every success in getting your SS affairs in order.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline darryaz

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Re: Just started SSDI Process & very scared.
« Reply #6 on: July 02, 2013, 10:48:56 PM »
Thanks for the reminder, Tampa.  I'm not sure what happened to my manners.

Welcome, Bravo and I wish you the best of luck with your SSDI adventure!!!!

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #7 on: July 03, 2013, 12:49:26 AM »
OneTampa and Darryaz, thanks for the encouraging words and warm welcome.

Offline Jeff G

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Re: Just started SSDI Process & very scared.
« Reply #8 on: July 03, 2013, 09:37:24 AM »
Hi Bravo and welcome to the forums . I want to start by saying I know you and your doctor are the only ones to really know if disability is the right thing for you to do .

I went on disability when I was too young . I got sick and back then there were no treatments for HIV so my doctors did the best they could and treated what ever opportunistic infection I got , I wasn't expected to live . I had no insurance and with certain death looming over me my doctors got me approved for disability benefits  .

I look back on my situation as case of wish I had known then what I know now . I wish I had not gotten those benefits because it was like I signed away my rights to live any other way than abject poverty .

Time got away from me and when my health improved I was stuck with a lapse in my work history and other issues that kept me dependent on a broken system . I tried my best and failed to regain my life and get off benefits so that I could take care of my basic needs , things like a roof over my head and food , very I struggled keep myself from becoming homeless . I wish I had continued to work and used the emergency room for my health care needs or found a clinic that worked on a sliding scale for my income .   

If you haven't already there are a few things you need to ask your self before you proceed . Can you provide for yourself on the benefits you will receive for the rest of your life ?  , you may not be able to get back to work if want to later on . If there are any long term goals or dreams you want to achieve in the future you may not be able to realize them if you become dependent . Is there a way you could possibly work so as to add to the amount you may get in benefits when or if it becomes your only option ? .

I wanted to put this out there whether it applies to you or not because I think other people may need to see and consider these things as well . I can not stress the fact enough that going on disability should be the choice of last resort . Going on disability was the worst mistake I ever made by far .

Offline mitch777

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Re: Just started SSDI Process & very scared.
« Reply #9 on: July 03, 2013, 11:22:10 AM »
Hi Bravo!
Welcome!

Lots of good advice given here already.
I would strongly consider what Jeff had to say if it applies to you.

I have been going through the process for over a year now. Been denied twice and will be going to a hearing in about a year from now. (Yes it can take that long.)
My story is too long to repeat here but you could read about my experience in this thread:
http://forums.poz.com/index.php?topic=45176.0
Hope it helps.

There are so many factors involved that are unique to anyone applying for disability.
It makes giving specific advice very difficult.

I will say that having your doctors "on your side" is important.
Another important issue is to have medical proof well documented.
Many of my issues would fall into the category of being "subjective". Not a comfortable way to plow through the system. :(
It's not like a doctor can "prove" with medical tests that my fatigue and chronic daily headaches exist.

I am 54 years old and have been poz for over 30 years. I held off applying for as long as I could. And now when I really need it I feel like I am having to jump through hoops. It is a long and frustrating process.
I have been keeping track of every medical appointment since 1/1/2011 to provide the SSA a better grasp of my challenges. To date I've chalked up a total of 129 visits with another 5 more scheduled this month. Not sure what "potential" employer would want to hire me knowing that I have needed to have an appointment on the average of once a week for the past 2 1/2 years. ::)
(sorry, this is getting long and am venting)

Anyway, wish you the best and should you go forward, keep your determination and patience. :)

m.



31 years hiv+ (oct. 2013) with a curtsy.

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #10 on: July 03, 2013, 11:39:30 AM »
Wow! Thanks Jeff and Mitch for your very insightful responses.

Offline Ann

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Re: Just started SSDI Process & very scared.
« Reply #11 on: July 03, 2013, 11:50:43 AM »
Bravo, part of your first post brings up some questions:


I was first diagnosed in 2002 with CD count 38 and my CD Count has not seen any significant improvement. Within the last 12 years my CD4 has ranged from 100 - 250. It just recently dropped to 200, with viral load of 50. I'm really struggling with a lot of health issues, recurring genital herpes, ....


Are you on hiv meds? If you are, is that VL of 50 a recent blip, or have you been low-level detectable for some time? If you have been detectable, is your doctor doing anything about changing your meds?

Regarding the herpes, do you take acyclovir? You don't have to deal with constant herpes outbreaks. Daily acyclovir would stop them, and acyclovir is available as an inexpensive generic.

http://www.aidsmeds.com/articles/Herpes_6789.shtml

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #12 on: July 03, 2013, 12:52:27 PM »

Hi Ann,  last year I was undetectable a couple times, but my last two tests had viral 65 and 50 respectively. I was on Epzicon and Viramune  but in April 2013 my Doc changed it Truvada & Viramune and my viral load dropped from 65 to 50. My CD4 count has not seen any significant improvement since I was diagnosed in 2002.  My ID Doc says, 100-250 CD4 is probably my baseline line because of my recurrent Herpes and Chronic Thrombocytopenia.  I've been taking Acyclovir since 2002 for the recurrent Herpes but I'm still getting regular flareups.  Maybe my immune system is now resistant to Acyclovir or I don't have any left.  I've been on Combevir & Viramune, Sustiva & Viramune, Epzicon & Viramune and currently on Truvada & Viramune. Don't know what else to try.   Thanks

Online BT65

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Re: Just started SSDI Process & very scared.
« Reply #13 on: July 04, 2013, 05:37:36 AM »
Hi Bravo,

I wanted to welcome you to the forums and say good luck with pursuing disability.  I, like Jeff, was an early pozzie, and was approved fairly quickly for disability.  Of course, as Jeff has said, most of us diagnosed back then were not expected to live. 

However, now I do work part time.  If you are able to get disability and later on want to supplement your income, you can get back into the work force, even part time.  I did try getting off disability and working full time, but my body was not able to handle it, so I am supplementing my income.  There are agencies geared toward working with people on disability to get them jobs, while working with the individuals to maintain their benefits. I also wanted to say that there was a huge gap in my work history; prior to being hired in 2009, I hadn't worked since 1992 or '93.  Which made it harder to find employment again.

From what I've seen, and with my clients (I'm a case manager), the disability process today seems to be pretty long.  But if your doctor has good documentation, and can write up a good report confirming your total disability, it may not be too upsetting for you.

Good luck and please keep us updated on your journey!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #14 on: July 04, 2013, 09:05:05 AM »
Betty, Thank you so much for the advice and encouragement. I'm learning a lot from this forum.

Offline darryaz

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Re: Just started SSDI Process & very scared.
« Reply #15 on: July 04, 2013, 09:19:21 AM »
I wish I had not gotten those benefits because it was like I signed away my rights to live any other way than abject poverty .

Just thinking out loud here, but I'm wondering if Jeff's experience occurred before the Americans with Disabilities Act went into effect in 1990.  And I'm curious if ADA changed the climate at all.



Offline Jeff G

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Re: Just started SSDI Process & very scared.
« Reply #16 on: July 04, 2013, 10:27:28 AM »
Just thinking out loud here, but I'm wondering if Jeff's experience occurred before the Americans with Disabilities Act went into effect in 1990.  And I'm curious if ADA changed the climate at all.




Nothing in the ADA that I am aware addressed the issue .

The best program put forth is the back to work program Betty was talking about . At one point I was living on $870 a month and many times ran out of food the last week before payday . I checked into getting onto food stamps but as a single person I could only get $20 a month in assistance so I never bothered . I tried to find work but no one would hire me in the community where I lived because I was out about my HIV status ... in Alabama .

There are ways to navigate the system but I just wanted to start a conversation about the what living on disability can mean , especially  to the young adult with many years ahead of them . I may have created a hijack of the OP's thread if none of this applies to him but I just thought it needed to be discussed .

The truth is in my situation , I really needed to be on disability many times , and there were times I was able to work if I could have found employment so Betty brought up good suggestions and alternatives .   

Offline jkinatl2

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Re: Just started SSDI Process & very scared.
« Reply #17 on: July 04, 2013, 01:07:43 PM »
Just thinking out loud here, but I'm wondering if Jeff's experience occurred before the Americans with Disabilities Act went into effect in 1990.  And I'm curious if ADA changed the climate at all.




ADA did not change the climate. I went on disability in 1994 and currently live off of a little over $700 a month. It is poverty, stigma, and fear. Every year I must prive I have nothing, in triplicate, in appointments I do not schedule and dare not change. I would not recommend it for anyone who wishes to live any sort of meaningful life.

It keeps me from being homeless, and I have internet access.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Online BT65

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Re: Just started SSDI Process & very scared.
« Reply #18 on: July 04, 2013, 08:16:40 PM »
Nothing in the ADA that I am aware addressed the issue .

The best program put forth is the back to work program Betty was talking about .

This is actually the "ticket to work" program, but I did not use this.  I simply went back to school, got an undergrad degree, and started volunteering.  I also worked with an employment specialist at Goodwill who gave me the lead on that church where I worked with the homeless. 

I was already associated with the ASO where I currently work.  The director closed my case and I could not be a client for a year for them to offer me a job, which happened.  I started out part time, then tried full time, but went back to part time. 

I've heard mixed reviews about the ticket to work program.  I would, if anyone would want to find part time employment and keep their benefits, suggest talking with a benefits specialist which SSA can provide the info in one's area.  Then you will learn the nuts and bolts of going back to work while attempting to keep benefits.

Since I was in the extended period of eligibility, when I worked full time and went back to part time, I only had to go one month without my disability check being reinstated.  When a person is in that period and the work drops to below SGA, the disability gets reinstated quickly.  Now, when that period is up, I have no idea what will happen, if I will be reviewed, if I will be cut off, or what. 

I do know that while one's applying for disability it is suggested the person not work any job where taxes are being taken out, even if it's only 2 hours a week.  Once one is actually receiving disability it's a little different story.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: Just started SSDI Process & very scared.
« Reply #19 on: July 04, 2013, 11:59:40 PM »
ADA did not change the climate. I went on disability in 1994 and currently live off of a little over $700 a month. It is poverty, stigma, and fear. Every year I must prive I have nothing, in triplicate, in appointments I do not schedule and dare not change. I would not recommend it for anyone who wishes to live any sort of meaningful life.

It keeps me from being homeless, and I have internet access.
preach brother!

however, I have only had net access when I lived with roommates, partners, or family. during my alone yrs without partners or roomies, I had to close my internet account to keep the roof over my head.

living on disability is not for the faint of heart;
but being this poor does keep my access to medications every month.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline intaglio

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Re: Just started SSDI Process & very scared.
« Reply #20 on: August 11, 2013, 05:42:08 AM »
I applied for SSDI years ago due to a TBI (I was thrown from a moving vehicle -bouncy, bouncy on my head).

They will deny your initial claim, unless you are dying -or dead. That's normal. It's not about giving you this benefit, but finding reasons to not award it to you. The initial denial has been shown to dissuade people and cuts down the number of applicants willing to pursue it further.

Any letter they send you will have verbiage stating "you should receive notification in XX days". The very next day after that date passes, you need to be contacting SSA. Don't let things languish, waiting for them. They will not move your case forward unless you keep it moving. When you contact them, mention the letter, mention it specifically said you would receive notification -and you did not.

I had the help of a disability advocate that was employed by my US senator. Any time SSA did not contact me when they were supposed to, I was able to contact him, give him the documentation and he got them to take the action they said they would. Check to see if there is someone like that working for any of your congressional reps.

My doctors cooperated fully and were very supportive of my decision to apply. SSA still sent notifications they hadn't received the proper documentation -even when I had hand-delivered it to my local office.

I still ended up having to go through the appeals process and appeared before an administrative judge. You will likely have to escalate your appeal to this level. During this meeting, you will be asked if you can do specific tasks, as they relate to your disability. Be honest, but answer as to your capability on your worst day or under the worst conditions, not when you would be at your best.

Good luck. Your attorney doesn't get paid unless you get your disability. So the fact you were able to engage one says you have good reason to apply.
Reality is frequently inaccurate.

Offline Bravo

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Re: Just started SSDI Process & very scared.
« Reply #21 on: August 11, 2013, 05:38:14 PM »
Thanks Intaglio, your advice really means alot. My Attorney submitted all my records and some of my doctors also responded. Beginning of July, I called my DDS Examiner and she confirmed receiving all my records. Called again mid of July and end of July for update but no response from her. So I'm in a waiting game now.

 


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