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Author Topic: Social Security Disability and HIV  (Read 18342 times)

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Offline JR Gabbard

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  • Member
  • Posts: 283
  • Union Jacks
Social Security Disability and HIV
« on: March 03, 2009, 09:04:26 pm »

SSA came out in June '08 with new rules for Immune System disabilities, including HIV infection.

As the first major installment of my "get all HIV-related law spelled out in one place on the internet" pseudo-madness, I have compiled this set of wiki pages, spelling out in some detail the substantive regulations that govern SSA disability decisions on HIV infection.  You can read my foreword here.

It includes the rules on non-medical eligibility, an explanation of SSA's definition of disability, what specifically SSA looks for when making a disability determination, which specific OIs does SSA recognize as signs of severe immune system damage that could render you unable to work.  Also a bit of what SSA means by "work."  There are the rules SSA uses to decide if substance abuse is a material contributing factor in your disability, and the effect of such a finding in terms of available resources.  There are the rules for overpayments, for working while receiving disability benefits, and for CDRs.  And more.

It does not include anything about SSA procedure, like how to file an application, what does SSA want in terms of evidence, etc.  That is all coming soon, and when I finish I will be presenting all this in a series of webinars, because real time feedback would help lots.

In the meantime if you would like to participate, I have set up forums for your questions, and/or you can comment on the wiki page itself, or on the wiki blawg.  You have to register first.  I set it up with email confirmation, so you can post as soon as you confirm your email (duh).  I check the site in the morning, and late afternoon California time (PST currently).

Now that I have some momentum built up, I expect that I'll be able to pick up the pace somewhat.  This is the kind of project where the hardest part is getting started.  Done.  Although in my defense I will just direct your attention to the section on the General Areas of Functioning, specifically the section about "Completing Tasks....", and remind everyone that I have been on SSDI for more than 6 years now, and been medically eligible for a lot longer.  What was I saying, again.....

Oh yeah.  If any stray lawyer, who knows something about how the law handles HIV and those of us living with it, should happen upon this post and, taking pity upon me, wants to help with wiki pages, I can hook this intrepid individual up!

Joking aside, I do hope folks will find this useful!
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline YaKaMein

  • Member
  • Posts: 368
Re: Social Security Disability and HIV
« Reply #1 on: March 10, 2009, 06:32:37 pm »
Sweet,
I think it's an excellent compilation of SSDI & HIV matters. Very well organized and pertinent to questions that crop up. Thanks for doing this so well. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Online leatherman

  • Global Moderator
  • Member
  • Posts: 8,619
  • Google and HIV meds are Your Friends
Re: Social Security Disability and HIV
« Reply #2 on: March 10, 2009, 10:22:04 pm »
I'm able to access all the links to the topics;
but it says I have to register and login to read the foreward  ::)  ;D

What a great resource though!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Mulgeeq

  • New Member
  • Posts: 2
Re: Social Security Disability and HIV
« Reply #3 on: June 07, 2011, 12:06:01 pm »
SSA came out in June '08 with new rules for Immune System disabilities, including HIV infection.

As the first major installment of my "get all HIV-related law spelled out in one place on the internet" pseudo-madness, I have compiled this set of wiki pages, spelling out in some detail the substantive regulations that govern SSA disability decisions on HIV infection.  You can read my foreword here.

It includes the rules on non-medical eligibility, an explanation of SSA's definition of disability, what specifically SSA looks for when making a disability determination, which specific OIs does SSA recognize as signs of severe immune system damage that could render you unable to work.  Also a bit of what SSA means by "work."  There are the rules SSA uses to decide if substance abuse is a material contributing factor in your disability, and the effect of such a finding in terms of available resources.  There are the rules for overpayments, for working while receiving disability benefits, and for CDRs.  And more.

It does not include anything about SSA procedure, like how to file an application, what does SSA want in terms of evidence, etc.  That is all coming soon, and when I finish I will be presenting all this in a series of webinars, because real time feedback would help lots.

In the meantime if you would like to participate, I have set up forums for your questions, and/or you can comment on the wiki page itself, or on the wiki blawg.  You have to register first.  I set it up with email confirmation, so you can post as soon as you confirm your email (duh).  I check the site in the morning, and late afternoon California time (PST currently).

Now that I have some momentum built up, I expect that I'll be able to pick up the pace somewhat.  This is the kind of project where the hardest part is getting started.  Done.  Although in my defense I will just direct your attention to the section on the General Areas of Functioning, specifically the section about "Completing Tasks....", and remind everyone that I have been on SSDI for more than 6 years now, and been medically eligible for a lot longer.  What was I saying, again.....

Oh yeah.  If any stray lawyer, who knows something about how the law handles HIV and those of us living with it, should happen upon this post and, taking pity upon me, wants to help with wiki pages, I can hook this intrepid individual up!

Joking aside, I do hope folks will find this useful!

Offline Mulgeeq

  • New Member
  • Posts: 2
Re: Social Security Disability and HIV
« Reply #4 on: June 07, 2011, 12:27:50 pm »
Hi
I am not able to locate the wiki pages referred to.  Any help would be appreciated.
John Mulgeeq

Offline JR Gabbard

  • Moderator
  • Member
  • Posts: 283
  • Union Jacks
Re: Social Security Disability and HIV
« Reply #5 on: June 07, 2011, 01:35:01 pm »
Hi Mulgeeq,

That domain went inactive about a year ago, and I haven't put the wiki back up.  I still have the files, but they live on my PC until I get a new domain.

If you have a specific question, post it here and I'll try to answer it.  Alternatively, you could check out the HIV-related listings here.  HIV is listing 14.08.
It goes like this
The fourth, the fifth,
The minor fall, the major lift,
The baffled king composing Hallelujah!

L. Cohen

Offline TnMan62

  • Member
  • Posts: 14
Social Security and going back to work
« Reply #6 on: October 07, 2011, 07:54:30 pm »
As someone who has been on SSDI for a number of years now, but with my health at a now steady and overall good pace, I'd like to try to go back to work and have a "normal" paycheck/life, but, am not sure if it is something I should try, for fear of being looked at as someone who has not been in the workforce for quite some time. I am one of those people who seems "stuck". Wanting to be able to have a job, but, not wanting to lose the benefits of keeping my meds paid for, and/or maintaining my health care.
Does anyone have any suggestions? I have read about the Ticket To Work Program, but have been advised against that for various reasons. But, feel if I apply for a job, I'll be turned down  due to  years of not  working. Any thoughts????

Offline klipsch

  • Member
  • Posts: 90
Re: Social Security and going back to work
« Reply #7 on: October 09, 2011, 11:12:56 am »
As someone who has been on SSDI for a number of years now, but with my health at a now steady and overall good pace, I'd like to try to go back to work and have a "normal" paycheck/life, but, am not sure if it is something I should try, for fear of being looked at as someone who has not been in the workforce for quite some time. I am one of those people who seems "stuck". Wanting to be able to have a job, but, not wanting to lose the benefits of keeping my meds paid for, and/or maintaining my health care.
Does anyone have any suggestions? I have read about the Ticket To Work Program, but have been advised against that for various reasons. But, feel if I apply for a job, I'll be turned down  due to  years of not  working. Any thoughts????

I wouldn't assume that you need to be completely honest about your SSDI/Work history. There are ways of being "creative" in your search for work. I'm in a similar situation...but I'm opting to go through Vocational Rehab to update my job skills in an area of work that I feel that I'll be able to maintain my employable status. I haven't decided what that field would be just yet though. Maybe computers, where I'll be able to work from home and not expose myself to the ignorance of an office environment???
when shit has value...the poor will be born without assholes...

Offline TnMan62

  • Member
  • Posts: 14
Re: Social Security Disability and HIV
« Reply #8 on: October 09, 2011, 12:27:47 pm »
Thanks for the reply. It gives me  something to look into, and to possibly give a try. Like you, I'm unsure what area I would want to go as far as job placement. Computers would be great, and working from home as well, might be a great option. Thanks for your help!

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Social Security and going back to work
« Reply #9 on: October 09, 2011, 01:19:38 pm »
I wouldn't assume that you need to be completely honest about your SSDI/Work history.

Yeah, dishonesty would definitely be a quality that I would be looking for in a potential employee.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline klipsch

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  • Posts: 90
Re: Social Security and going back to work
« Reply #10 on: October 09, 2011, 06:50:04 pm »
Yeah, dishonesty would definitely be a quality that I would be looking for in a potential employee.

"Yeah...I've been on SSDI for years due to HIV and any number of HIV onset medical conditions. I know I'll be a high utilizer of your medical plan and possibly increase your rates next year. But I'm as qualified as any other candidate...that doesn't have any medical problems or history with Social Security"

I'm not saying to be dishonest...but I'm not suggesting complete honesty either. Equal opportunity employment is nice in theory...
when shit has value...the poor will be born without assholes...

Offline phildinftlaudy

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  • Posts: 2,985
  • sweet Ann what you think babe...
Re: Social Security and going back to work
« Reply #11 on: October 09, 2011, 07:20:31 pm »
"Yeah...I've been on SSDI for years due to HIV and any number of HIV onset medical conditions. I know I'll be a high utilizer of your medical plan and possibly increase your rates next year. But I'm as qualified as any other candidate...that doesn't have any medical problems or history with Social Security"

I'm not saying to be dishonest...but I'm not suggesting complete honesty either. Equal opportunity employment is nice in theory...

I understand what you were getting at - I think it was more the phrasing that I was questioning - rather than saying that one doesn't have to be completely honest, might be better to explore other ways of handling the issue - and a lot depends on the type of work the person is looking for.  If they are looking for working in human services, say with an ASO, then disclosure is usually a positive thing (no pun intended).  In other cases, one might address it as saying that they were on disability; however, they are no longer on disability, they are healthy, and ready to work.... much of it is going to depend on how one presents at the interview and if they have the skills, knowledge, and abilities that make them a good fit for the job and a potential asset to the employer.  In most cases, I don't think anyone is going to walk in with a banner or t-shirt saying "hey, I'm poz" - but not doing that, doesn't make them dishonest - it is just something that they are not disclosing and are under no obligation to do so....  but to say "I'm not saying to be dishonest... but I'm not not suggesting complete honesty either" is the equivalent of someone saying "I am a little bit pregnant" --- they are either pregnant or they are not pregnant.  A person is either being honest or they are not being honest. 

Two different issues (honesty vs. dishonesty or disclosure vs. non-disclosure) --- not disclosing does not inherently make one dishonest.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline klipsch

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  • Posts: 90
Re: Social Security and going back to work
« Reply #12 on: October 10, 2011, 09:45:36 am »
I understand what you were getting at - I think it was more the phrasing that I was questioning - rather than saying that one doesn't have to be completely honest, might be better to explore other ways of handling the issue - and a lot depends on the type of work the person is looking for.  If they are looking for working in human services, say with an ASO, then disclosure is usually a positive thing (no pun intended).  In other cases, one might address it as saying that they were on disability; however, they are no longer on disability, they are healthy, and ready to work.... much of it is going to depend on how one presents at the interview and if they have the skills, knowledge, and abilities that make them a good fit for the job and a potential asset to the employer.  In most cases, I don't think anyone is going to walk in with a banner or t-shirt saying "hey, I'm poz" - but not doing that, doesn't make them dishonest - it is just something that they are not disclosing and are under no obligation to do so....  but to say "I'm not saying to be dishonest... but I'm not not suggesting complete honesty either" is the equivalent of someone saying "I am a little bit pregnant" --- they are either pregnant or they are not pregnant.  A person is either being honest or they are not being honest. 

Two different issues (honesty vs. dishonesty or disclosure vs. non-disclosure) --- not disclosing does not inherently make one dishonest.

All good points. The only thing that I think would be most important once deciding to reenter the workforce...is to have a very clear and concise plan of what direction you're going in. At least this is what I'm thinking for myself. Meaning that I have the education necessary and the understanding that I may expose myself to possible stigma/ignorance again if my medical conditions become known and/or a problem to future employers. I would imagine that getting back on SSDI once getting off...would be fairly difficult
when shit has value...the poor will be born without assholes...

Offline TnMan62

  • Member
  • Posts: 14
Re: Social Security Disability and HIV
« Reply #13 on: October 10, 2011, 04:22:38 pm »
You are probably right in that it would be hard to go back on SSDI. Again, one of those things that plays into the picture, and one I think about for sure. Its not that I can't survive on SSDI, but have the thought from time to time of trying to rejoin the workplace. Guess I'll just tough it out for another 50 years.
 ;D

 


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