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Author Topic: SSDI Advise  (Read 20948 times)

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Offline Gary S

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SSDI Advise
« on: April 11, 2011, 12:03:51 PM »
 I'm 54 and I was diagnosed with HIV in 1988 and AIDS in 1995. I worked for a company for over 21 years as an executive and recently (September) went out on their disability for a variety if issues (diarrhea, nueropathy, headaches, nausea, extreme fatigue, memory loss etc., etc.,  etc. )

I'm required to apply for SSDI under the LTD plan and i really need it because my COBRA will run out in 18 months and I know I will not be able to get insurance so I'm depending on Medicaid through SSDI for healthcare.

My T-Cells are fine now and VL is undetectable but I can no longer do the job. It was literally killing me.

The LTD company has provided the services of Allsup to assist me in the SSDI process but I was wondering if any of you could give me advise/ watch outs as I go through the process.

I'm concerned SSDI is going to use the T-Cells and VL results against me.

As I've said before, this forum has been a God send for me. I only wish i had discovered it years ago. thank you all for your assistance.

Offline lipoenvy

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Re: SSDI Advise
« Reply #1 on: April 12, 2011, 11:43:55 AM »
My experience is that Social Security uses its own standards for determining disability based on your functioning and on your doctor's assessment, not on T-cell counts or viral load.  A disability determination is granted if you can no longer support yourself through full-time work.  You may be in for a bumpy ride in applying for SSDI, but stick to your guns and do not be tempted to minimize your symptoms -- be consistent in detailing how they prevent you from working full-time any more.

Don't be discouraged if your application is denied at first.  Be prepared to appeal.  Don't accept a "no" answer.

Having someone guide me through the SSD application was very helpful to me.  It's good that you will have someone assisting you.  Pulling all the paperwork together is a pain, and it's daunting, but it will be worth it.

Medicare kicks in two years after SSDI payments start, and SSDI payments start (if granted) six months after you stop working, so you'll probably end up with a gap in coverage that will be a challenge to fill.  An ASO should be able to advise you on availability of Medicaid and high-risk insurance pool coverage in your state.

Going on disability is like jumping out of an airplane before you know if you have a parachute.  Keep the faith.

lipoenvy

Offline Gary S

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Re: SSDI Advise
« Reply #2 on: April 16, 2011, 10:06:08 AM »
Thank you lipoenvy for your response

Offline denb45

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Re: SSDI Advise
« Reply #3 on: April 16, 2011, 10:40:34 AM »


I'm concerned SSDI is going to use the T-Cells and VL results against me.

As I've said before, this forum has been a God send for me. I only wish i had discovered it years ago. thank you all for your assistance.

You will NOT get SSDI if your t-cells and VL are in good standing, and YES those results will work against you, I know that isn't what you want hear, but, if your symptoms are such to where they are debilitating, and you can no-longer work, due to this, SSDI will take a very hard look @ all of this, and if it is determined that they feel you can no longer work in the field your in, then, you will be approved for SSDI..

 I went thur this very same process 12 yrs ago, and I wasn't approved until the 3rd time around, I was on my states disability for well over 18 months as well as Cobra & Obra until I was approved , then after this, when i got my SSDI award letter, I was then able to get my work pension....good luck to you, it's a very grueling process, and you are going need a lot of support from family , friends and whoever else, THAT was when I found out who was really my fiends and who were not, a good support system is always helpful  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online leatherman

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Re: SSDI Advise
« Reply #4 on: April 16, 2011, 10:43:55 AM »
Going on disability is like jumping out of an airplane before you know if you have a parachute.
that's a GREAT description! ;)
Anyone that has gone through the process understands what the word "destitute" means long before any award (ie parachute) is granted. ;)
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline denb45

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Re: SSDI Advise
« Reply #5 on: April 16, 2011, 10:45:21 AM »
that's a GREAT description! ;)
Anyone that has gone through the process understands what the word "destitute" means long before any award (ie parachute) is granted. ;)

AMEN Brother  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Gary S

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Re: SSDI Advise
« Reply #6 on: April 16, 2011, 12:20:42 PM »
Thanks for the input. Your responses are appreciated albeit sobering!!

So will SSDI be determining if I can do the job/ work I have been doing the past 20 years or ANY job. In other words, will they deny me because they determine I could be a toll collector??

Offline denb45

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Re: SSDI Advise
« Reply #7 on: April 16, 2011, 12:40:04 PM »
Thanks for the input. Your responses are appreciated albeit sobering!!

So will SSDI be determining if I can do the job/ work I have been doing the past 20 years or ANY job. In other words, will they deny me because they determine I could be a toll collector??

Yes & No SSDI is given to people w/ debilitating symptoms that you suffer form ANY health related problem that doesn't allow you to do any work past or present  ;) SSDI will almost always deny you the 1st time and maybe even the 2nd time, but don't give up, stick to your guns, and keep paper work, keep health records, and take lots of copious notes about your case, not only was I approved for AIDS, but also, a lot of other related health problems that I still suffer form even today after 12 to 13 yrs. my AIDS has gotten better, but
not much else  ;)
« Last Edit: April 16, 2011, 12:49:51 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: SSDI Advise
« Reply #8 on: April 16, 2011, 12:44:14 PM »
While I appreciate Dennis' input and experience, on the hand my own was completely different.  I was approved for SSDI the first go around, and at least in NY where I filed in 2002 they "flag" HIV applications and expedite them.  As far as cd4 and viral load counts I'm not sure if it's accurate on being a determining factor -- at least when I filed there was a list of OI's that qualified you, and at the time I had wasting issues so it helped that when I showed up to file in person I looked like a concentration camp victim.  I was also fortunate in that my psychiatrist's previous job before his private practice had been working on disability claims, so he schooled me on what to say and do during the process, though I forget the particulars.  Anyway, I was approved within six months of filing.

Gary, you need to make sure that all of the factors you stated in your first post are completely documented by your HIV physician in your chart.  If you are denied then you go through an appeals process that takes longer, and many cities have AIDS-specific legal entities that can handle and appeal either for free or at a lower cost.  However if you have to go through an appeal you need to consider how you will financially survive that duration.

Also in terms of COBRA running out when that happened to me, and since there's a period that you have to wait until Medicare kicks in even after your disability approval, some states have programs that will pay for insurance coverage.  NY did at the time, in fact they paid for a $700/mo policy for me for around a year or so which I was quite surprised about.  I live in Pennsylvania now and I don't think anything like that is offered, but they must have something that they do. Of course all of that sort of stuff varies widely depending on the state you find yourself in, and right now a lot of states can barely keep up with ADAP funding and have cut out all sorts of this other stuff.  You definitely want to have a good case manager at an ASO while you go through all of this, and be prepared to get stressed out at times.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: SSDI Advise
« Reply #9 on: April 16, 2011, 12:55:42 PM »
either for free or at a lower cost.  However if you have to go through an appeal you need to consider how you will financially survive that duration.

Right On Miss P  :-*


Yes, everyone's case is different  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Gary S

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Re: SSDI Advise
« Reply #10 on: April 16, 2011, 01:10:33 PM »
Wow...quite a lot to absorb and I feel very uneducated in this arena. I have worked 6-7 days, 60-70 hours per week for nearly 2 decades in my field and have frankly neglected my health. Because of this forum, I just learned I could get help with my HIV med co-pays.

So I know this may sound goofy to you, but what is an ASO? As stated, I'm really uneducated about all of this and I'm not familiar with abbreviations and acronyms.

Thanks very much for taking the time to help me

Offline hope_for_a_cure

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Re: SSDI Advise
« Reply #11 on: April 16, 2011, 01:19:01 PM »
My claim was approved on the first submission to my surprise.  I always thought it was my CD4 count of 4 with a VL of around 230K that got me approved but apparently there was more to it. 

Gary, it sounds like when your benefit does kick in, the award will be somewhat substantial since you have so many quarters on file.  Good luck with the process.

Offline Ann

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Re: SSDI Advise
« Reply #12 on: April 16, 2011, 01:24:14 PM »
Gary, an ASO is an Aids Service Organisation. You can find one near you by using POZ.com's Health Services Directory. Scroll down to the second section - the first is for finding hiv testing centers.
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"...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

LabRat

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Re: SSDI Advise
« Reply #13 on: April 18, 2011, 10:27:49 AM »
I hope this helps Gary.
When I went out on disability from my employer, I kept my health insurance by switching from a group policy to an individual policy within the required time frame (I believe it was 3 months). I also did the same with my life insurance policy. The change required me to pay the premiums for both, but I had no gap in coverage.

Later, I sold my life insurance policy to a viatical settlement company. They pay you a portion of what your life insurance is worth and you name the company as beneficiary. The viatical settlement company then pays the life insurance premiums. I used the cash to pay off loans and pay my health insurance premiums. A good ASO will guide you through the process.

Offline ga1964

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Re: SSDI Advise
« Reply #14 on: April 19, 2011, 02:49:42 AM »
I've just recently filed for SSDI after having a melt down several weeks ago.  My Dad asked the therapist that saw me when I was having my melt down if I would be able to qualify for SSDI and she said I should qualify for sure.  When I asked my Case Manager at the health department about it last year, she said that they would turn me down because  my CD-4 count was above 600 and my VL. was undetectable, even though my CD-4 count was 191 when I was diagnosed.  I don't know if this was true or not, because I got the feeling that she did not want to be bothered with the paper work.

Today I received 3 separate letters from the Social Security Office, each asking for more detailed information about my condition, work history, and something else I can't think of at this time.  When I was initially interviewed, they had my work history for the last 20 years, but the letter I received today concerning my work history, they were asking for the last 15 years.  Go figure!  I'm going to fill them out tomorrow and get them in the mail ASAP, hopefully to expedite the process.

After reading some of the post here, it makes me wonder what all I'll have to contend with to get approved. 

Offline JR Gabbard

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Re: SSDI Advise
« Reply #15 on: April 19, 2011, 10:26:45 PM »
Hi Gary,

SSA will make their disability determination based on your medical records.  They will be looking for evidence that you have been diagnosed with one or more of the "Listings," which are basically manifestations of severe or advanced HIV infection.  If they don't find the right medical evidence in your record, they look at the frequency and severity of infections/periods of illness that are due to HIV infection.

A low CD4 count and detectable viral load might tend to indicate that your HIV infection is severe or advanced, but if you read through the Listings, you will see that they are not mentioned as a stand-alone diagnosis.  When SSA looks at CD4 counts, they tend to look at the lowest count in your medical history.  An undetectable viral load shows that you are responding to treatment, and SSA is not allowed to consider that as a negative when they determine disability.

It is good that you have someone representing you on your claim.  Having a rep usually makes all the difference in getting your claim approved the first time.  The reason your LTD company is making you apply for SSDI is because once your SSA claim is approved, they only pay the difference between what SSA pays and what you are due under the LTD policy.  Without the SSDI, they are on the hook for your full monthly benefit. 

Best of luck, and keep us posted on how it works out for you!
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline Gary S

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Re: SSDI Advise
« Reply #16 on: April 20, 2011, 10:43:23 AM »
Thanks all for the very useful information.

Lab Rat:  Any idea how much converting from COBRA to an individual policy could possibly cost? I viadicated all of my life insurance back in 1996 so that's not an option to pay for it and my sense is they can charge whatever they want and if that rate will be based on my claims history, I'm up the creek (so to speak).

JR: The Listing is VERY informative on how they will consider my symptoms in making their determination


Thanks so much!!

LabRat

  • Guest
Re: SSDI Advise
« Reply #17 on: April 20, 2011, 11:16:44 AM »
Gary,
Glad to know you already viaticated your life insurance. My viatical insurance company still contacts both my doctor's office and me every few months to see if I'm indeed still alive!

If I remember correctly, my individual policy kicked in when my Cobra expired...about 3 months. The cost for an individual policy depends on your current health insurance carrier. You could contact them and get a quote.  For me it wasn't too bad, but that was back in 1993. Not sure what it would be today.

Offline Gary S

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Re: SSDI Advise
« Reply #18 on: April 20, 2011, 03:04:16 PM »
No conversion clause in my group policy :'(  so after COBRA they are done with me and I'm sure they are delighted.

So if I'm denied SSDI, it looks my options are High Risk policy ( which i understand to even be eligible for I must be without insurance for 6 months and  have been denied by an insurance company because of my health issues) or try and find a job I can do that will provide insurance.

If Obama Care makes it out alive, it looks like there may be relief in 2014. Still leaves me with about a 15 month gap and I can't stake my future on that component of Obama's Health Reform making through the Republican fleecing the new law is going to no doubt receive.   

Anyone know of something that has not been surfaced. I wont qualify for any income/ asset based assistance, I can't afford even if  I could get an individual  policy and going back to work full time does not feel like an option at this point. Stuck in the middle I guess >:(

Offline denb45

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Re: SSDI Advise
« Reply #19 on: April 20, 2011, 03:16:07 PM »
Well there always your states medicaid, but to get that, you have to be so far below FPL, and so destitute
 to even be considered for it, there is your local ASO, but, if your income is too high, that might be problematic, however, some states do have a risk-pool-Ins-program  that will pay your premiums, but you are still gonna have large co-pays for your meds, then there is your states ADAP program , but depending what state you live in, there could be a wait-list. and most states have already cut-back on income-levels
I'm sure someone in here can come up w/ something, and will chime-in w/ some better info  ;)
« Last Edit: April 20, 2011, 03:30:07 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mikejh

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Re: SSDI Advise
« Reply #20 on: April 20, 2011, 08:27:26 PM »
I were on unum longterm disability and they recquire that i apply for SSDI i went to HASA in New York and they have a office that help you apply, you don't have to fill out all this forms they do it directly in the computer. It took 6 months and I were called for a doctor examination I went there with my bag of 15 medications and the doctor did his exam and i saw a psychiatrist and she did her part and then I left, 2 months later i had my SSDI approved and got my back pay. The only thing I had to do were to give Unum back their part that were over paid during my wait period for SSDI. They did not care about my current VL or CD4 count only about all my other symptoms. So don't be dis-curridge to apply for SSDI.
CD4   %
22 Sep 06   37     5  Started Atripla
5   Oct 06   82     9
1   Dec 06  258   13
25 Jan  07  263   14
1   May 07  403   18
6   Aug 07  438   22
7   Nov 07  417   19
30 jan   08  310   19
7   May  08  285   20
6   Aug  08  472   27
12  Nov 08  444   26
11  Feb  09 335    19
10  May  09  460  25

Offline BigDaneDogs

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Re: SSDI Advise
« Reply #21 on: April 21, 2011, 02:17:02 AM »
Gary --- you are SO not alone.  I am mid-process on my SSDI applicaiton.  I hope to have an answer next month.  I'm in my 18th year of this "fun and festive" event in my life but over th last 3 - 4 years it has become increasingly difficult to work.  I was an Instructional Designer so my benefits will be better than a lot because of my earnings but it is still a DRAMATIC shift in my life.  Everyone on here is right about them wanting you to be all but destitute before they give you anything.  At this point I am reduced to calling my brother and having him send me checks out of my mother's estate just to pay my bills.  I am waiting on certification from my state's HIV drug program for my meds and just got on another pharmacutical program for another of my high dollar non-HIV meds.  I'm hoping my OI will assist with my certification for SSDI.  I have HCV also (surpirse to me.  It's NEVER to late for a new surprise).  I hope everything works out for you.  Just remember in filing out the MOUNTAINS of paperwork that a good portion of what they will be looking at will be the changes in your functionality of life.  What could you do that you can no longer do.  This will become very obvious to you as you start completing the paperwork.  Best of luck and keep us informed as you work your way through the process.  ;)
BigDaneDog because I have two big Danes.
Member since 1993

Offline danitheches

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Re: SSDI Advise
« Reply #22 on: May 11, 2011, 10:15:30 AM »
No conversion clause in my group policy :'(  so after COBRA they are done with me and I'm sure they are delighted.

So if I'm denied SSDI, it looks my options are High Risk policy ( which i understand to even be eligible for I must be without insurance for 6 months and  have been denied by an insurance company because of my health issues) or try and find a job I can do that will provide insurance.

If Obama Care makes it out alive, it looks like there may be relief in 2014. Still leaves me with about a 15 month gap and I can't stake my future on that component of Obama's Health Reform making through the Republican fleecing the new law is going to no doubt receive.   

Anyone know of something that has not been surfaced. I wont qualify for any income/ asset based assistance, I can't afford even if  I could get an individual  policy and going back to work full time does not feel like an option at this point. Stuck in the middle I guess >:(




You may want to look to see if your states' ADAP program has an insurance continuation program.  We have this in SC and people often don't use it and let their insurance lapse.  Since you have COBRA now this may not be an option as well, but I think it would be worth a phone call to see if they have other avenues that you can pursue.

Offline SunnyFlorida

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Re: SSDI Advise
« Reply #23 on: May 11, 2011, 01:18:26 PM »
I am intimately familiar with the process of applying for SSDI - it took me five months to get through it all and I ended up having to prove to the social security office that I was 100% deaf! They referred me to a doctor who did a hearing test. She looked at my numbers and said that my hearing levels were pretty much rock-bottom. Essentially from my experiences and hearing about others', they don't care about your medical history. They ignore that completely (otherwise they would have pulled up one of the couple dozen audiograms on record) and do an examination - it's like a snapshot of your current state of health. Even though I was born profoundly deaf, the government considered my disability to have begun on the day that I first applied for SSDI. Also, I'm guessing you'll be examined by a doctor of their choosing.

He or she will note the symptoms you've described and make a report to the government - honestly, it sounds like you shouldn't have much of an issue going through the process and being approved for SSDI. Just go with the motions and if push comes to shove, you have legal right to appeal the decision, but the chances of being declined in your case is pretty small. Good luck, and keep us posted!

Offline Gary S

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Re: SSDI Advise
« Reply #24 on: May 12, 2011, 08:36:42 AM »
Thanks Sunny. I hope you're right.  I'm OK right now because of Cobra although it's about $700 per month. There's no conversion clause so I get waves of anxiety about what to do after Cobra runs out. When I think about the retail cost of meds and the moves by our government to squash Obama care and, eliminate our ability to get generics, I get pretty stressed out. I feel like I have a bout of shingles coming on. Feels like raw nerves running up and down my legs.

I will not qualify for any asset/ income based assistance....not because I'm rich but because I'm not "poor enough". I guess I could go 6 months without insurance and get into the high risk pool. Again, more stress.

I worked my ass off for 30 years. It's disturbing to think this how our government says "Thanks".

Offline SunnyFlorida

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Re: SSDI Advise
« Reply #25 on: May 12, 2011, 11:48:59 AM »
I echo others' advice to contact your local ASO, they'll know exactly what to do to help you, perhaps you can take advantage of Ryan White. In the meantime... good luck! Hoping for the best for you!

Offline Assurbanipal

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Re: SSDI Advise
« Reply #26 on: May 13, 2011, 08:33:57 AM »
Thanks Sunny. I hope you're right.  I'm OK right now because of Cobra although it's about $700 per month. There's no conversion clause so I get waves of anxiety about what to do after Cobra runs out. When I think about the retail cost of meds and the moves by our government to squash Obama care and, eliminate our ability to get generics, I get pretty stressed out. I feel like I have a bout of shingles coming on. Feels like raw nerves running up and down my legs.

I will not qualify for any asset/ income based assistance....not because I'm rich but because I'm not "poor enough". I guess I could go 6 months without insurance and get into the high risk pool. Again, more stress.

I worked my ass off for 30 years. It's disturbing to think this how our government says "Thanks".

If there is no conversion clause with your COBRA policy  you ahould be eligible to buy a HIPAA policy from a state-run health insurance pool or an insurer after COBRA ends.

HIPAA (a federal law) requires that every state offer a way to continue health insurance when COBRA runs out.  Since states regulate insurance companies, some states do this by mandating that there be a conversion clause for insurance, others offer a state run plan -- but they all are required to offer something.  This has been in effect for years.  The new provision under the health reform bill addresses a different situation -- for people who did not have access to COBRA before trying to buy insurance. 

So talk to your local ASO about options or google your state insurance commissioners office.  The policies are not cheap, but they are out there.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline buca45

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Re: SSDI Advise
« Reply #27 on: May 28, 2011, 01:18:13 AM »
I was deemed eligible within 4 months of applying for SSDI benefits with basically no hassle from anyone. After hearing all sorts of stories of this process taking years to get through, I was scared shitless at the prospect of finding a way of supporting myself without being able to work! All of the anxiety I went through was not at all neccessary as I seemed to fly through the process.
I recall the questions about T cell and VL being asked and was told what they were looking for were the lowest counts and highest VL since being diagnosed...which at the time were around 120 T's and 250,000 VL when I first sought out treatment nearly 3 yrs after infection. Also a highly detailed record from every doctors visit (12+ per year for the last 14 years that verifies all the information you provide make all the difference. While I have not had any serious life threatening illnesses over my history, all of the little things such as side efffects and the general maladies we all have to endure while aging with this disease make my eligibility a life long thing. My prognosis is not at all good....the aches and pains and combined long term complications from tryiing almost all combos and drugs to combat the sideeffects have allowed me to be able to continue to collect both SSDI and ADAP assistance. Of course the $$$ is not a large amount of money and assistance ($1200/mo + no charge for ADAP drugs...(a total of $75,000-85,000 per year)... and no out of pocket  payments for doctors visits or tests) but it has allowed me to live a modest yet comfortable existence.
The illnesses/long term and unexpected side effects of HARRT combos that got me to apply for SSDI was a horrible, I could never wish this on my worst enemy thing. The nightmare of the horrendous long term side effects of Sustiva which included 3 hospitalizations due to severe psych episodes is something I will never forget. This bout included horrible dreams and mindblowing hallucinations during the day while I was working. It caused my otherwise under control depression/anxiety issues to come on stronger than ever. To say I was contemplating suicide was an understatement as I was actively seeking out  ways to carry out my gruesome plan. When I finally had enough, my HIV doc referred me to their psychiatrist who actually seemed afraid of having me in her office due to the stories of what I was suffering through. After two visits with her, she diagnosed me with late onset schizaphrenia/severe depression and anxiety...the late onset schiza was later rediagnosed as severe mental sideeffects from the Sustiva. I was told at the time I was in the under .01% of the population on the drug combo who were having to deal with such harsh suffering and pain. She 'forced' me to admit myself to the psych ward and when I hesitated  to do so that visit. she called 911 and had two crews of EMT and Police in her office within 5 minutes to accompany me to the ward right down the street. They 'escorted me to the mental ward and saw that I was admitted. So dramatic. That visit to the mental ward lasted one week with them seeming to use me as a guinea pig for a myriad of psych drugs...now that was hell trying to cope with each different combo of mental drugs before I finally was able to tolerate a total of three mental health combos to keep me in a good place dealing with these issues.
Anyway, thanks to that episode and the continuing horrible and seemingly life long side effects of Sustiva (after taking it for three months) I ended up losing my Server jobs and my genuinely kind and caring Tampa Bay area HIV Doc advised me on how to go about applying for it.
My first stop was to get an appointment at the Food Stamp office (was deemed to be an emergency person in need so it was the next day after calling the office) followed by a referral to Catholic Charities who paid my gas and electric bills and some emergency cash to buy non food items. They even offered me clothes and bedding which I kindly refused as I was all set in that area.
After I was determined eligible for FS (in one day) the SSDI application process was started and the paper work was filled out for SSDI. Three weeks after I sent in the application (not that daunting at all) I was called in for appointments for their Doctor's examination, a psych evaluation (telling the truth + a bit of embellishment)  and a general interview telling of my history since being detected POZ and all the problems HIV/AIDs had caused me to suffer.
Exactly 4 months to the week after filing for it, I received a call to come in to meet an SSDI representative at which point he told me I was qualified and the amount of my monthly checks.  I visited with him...a very compassionate and caring man who guided me through the process and told me all about the process and what I could expect in the coming years if my health did not improve...which it hasnt. In fact, I am now suffering from servere pain and neuropathy that causes me to be homebound doing only simple chores for myself. If it were not for the incredibly massive amounts of Oxycontin, Hydrocodone,  Xanax, Prozac and 10 other drugs, I would not be able to live my life as I do. Not exactly an idea way of living, but I am still here as strong as can be. Sure I am officically disabled for life but I make the best of what I am fortunate enough to have and keep as strong as can be. Other than bringing my once very active and busy life to a near stand still, I am still here when I gave up hope for a life years ago shortly after my diagnosis.
About a week later, I received a lump sum payment for 4 months back payments and a few days later, I received my first SSDI check for the month of June.
Prior to filing for SSDI, I had filed for ADAP/Ryan White and received meds and Doc care for around two years as I was employed as a Server...a job that never/rarely offers Insurance benefits. Since I had nearly zero savings and no liquid assets, I quickly went through the process and was deemed eligible for all assistance.
While it was difficult/humbling to accept the fact that I would never be able to work again and I would have to learn how to live on such a measly amount of $$ per month ($1200) overall, it has not been that difficult to make ends meet.
I consider myself extremely fortunate to have gotten through this process with no hassle and have only had to go in for one appointment (similar to the initlal interviews) to be reviewed for continued payments after 3 years on SSDI. At that meeting, I was told the outlook for ever  being able to work again due to the state of health was slim to none with no anticipation of being able to overcome all of the challenges I have had to face due mainly to side effects combined with the general aging and progression of wasting, lipoatrophy, severe pain and neuropathy and continued depression and anxiety. My T's remain at high 300s and have been undetectable for over three years now.
All during the process of getting this to become a reality, I encountered no mean spirited people, but rather only kind and compassionate workers at every office I had to deal with. I found out if you treat everyone who is in a position to help you with respect and a strong sense of candid and  honest communication combined with keeping yourself and your records organized  as much as possible, they too will treat you with the utmost respect and a strong sense of compassion and humanity.
I've  got to say, some of the things  I witness at the various assistance offices/doctors offices and the ignorant actions of those who were going through the same process were rather surprising! I encounted so many people who acted as though they truly believed they were entitled to all benefits without wanting to offer any information needed to make the determination for eligibility for assistance. So many people have such a strong sense of entitlement...that this is their free money and they could not grasp the need for their cooperation in providing the information needed for them to do their jobs in a timely and easy manner. The ignorance of the process and lack of respect and cooperation makes this a very difficult thing to go through. I also have to say never once did I ask for assistance from any ASO or case managers to get through this life saving process. Now with forums like this and all the information on hte internet, if you invest the due dilligence needed to obtain the assistance one needs to make life livable, it is possible to get through this process with a minimum of hassle and frustration.
Act like a respectful human being who has all their affairs in order and speak with respect to those trying to do their jobs and your experience will mirror mine. Treat all workers and agencies with the same respect you desire and everything will work out in your favor.
Here I am 10 years on SSDI and with the love and never ending source of inspiration of my dedicated and loyal partner, (and the love of my dogs)  I have a good home, plenty to eat, meds I need to survive and a truly amazing and one of a kind doctor who is one of the most wonderful people to have on my side. He works with me and his main goal is to make sure he is doing everything his office can do to make my fight that much easier.
Good luck to you and make sure you have all your I's d0tted and your T's crossed before each encounter with the assistance workers and you will come away with all of this being a positve experience.
"Love and Laughter and Happiness Ever After"

Offline buca45

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  • Posts: 187
Re: SSDI Advise
« Reply #28 on: May 28, 2011, 01:22:24 AM »
WOW, I can't believe how much I rattled on and on to make a few simple points. Please excuse my rambling as I was only seeking to show you that this process does not have to be the nightmare that so many of us have had to endure.
I sometimes have a hard time getting my point across as a times my mind does not quite work as fast and efficient as I would like it to work. Under the fog of all my meds sometimes I neglect to filter and edit my posts but after doing this for this long under these conditions, to me it seems like it is acceptable.
SO sorry for the long post...it's the best I can do under the circumstances!
Again, best wishes to you in getting through this process!!!
"Love and Laughter and Happiness Ever After"

Offline OneTampa

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  • Posts: 2,032
  • "Butterflies are free."
Re: SSDI Advise
« Reply #29 on: June 05, 2011, 06:24:01 PM »
Buca,

I read every word you and others posted in this thread and consider it a Masters Class of Information.

Thank you!
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline Gary S

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  • Posts: 60
Re: SSDI Advise
« Reply #30 on: June 08, 2011, 11:30:37 AM »
Buca,
  Thank you so much for taking the time to share your experience. I found it very informative and helpful and certainly not at all rambling.

 


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