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Author Topic: Finally on disability, now what  (Read 8185 times)

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Offline beau1200

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  • Posts: 17
Finally on disability, now what
« on: November 03, 2009, 12:48:41 am »
I have been positive for over 20 years.  I have been on LTD for about a year and a half.  I am having a hard time, emotionally, financially, and just getting used to the idea that I am not working.  My life has always been about my work.  My partner of 13 years and I broke up about 4 years ago.  I never thought I would feel so alone.  I am volunteering with a youth group and do HIV testing and counseling, along with risk management. 

I am earning 60% of my salary, and my cobra is almost $1000.00, everything is costing me more.  I would think that being disable, I would have more support.  I don't even know where to go to find help.  As soon as I contact an AIDS agency and they find out that I have an income, they are quick to tell me that they can not help me. 

Where do you go for support, help, and advice about living on disability.  I really thought I would die before i would ever happen to deal with this.  My health is great, non detectable, and the only issue I've had was getting my hips replaced. 

Any Ideas??  Thanks for your time.

Offline Dale Parker

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Re: Finally on disability, now what
« Reply #1 on: November 03, 2009, 01:55:26 am »
Hey Beau: I know the feeling of the salary drop. I went from almost $70,000 to just over $12,000 a year. I had to declare bankruptcy, move into subsidized housing and go on disability just to survive and get my meds.  I got lots of emergency support from welfare. I'm in Canada so some of my advise may not be applicable to you.
  I found that if you call your utilities (phone, cable etc.) and ask for Customer Relations (not Customer Support) sometimes you can get a reduction in your monthly charges. It really works if you threaten to pull your account from them and take your business elseware. A friend of mine told the cable company he was going to cancel his cable and put up an antenna. Prior to going bankrupt credit card companies were even willing to negotiate their interest rates.
    I'm fairly new (6 months) to this Aids thing and part of my coming to terms with it was to tell everyone my story. It was amazing how agencies referred me to other agencies that could help me.
Unemployment referred me to welfare and actually told me what programs to ask for. Welfare got me on disability faster and easier than going directly thru the disability office.
   With so many people being out of work right now there is no shame in asking for discounts and deals. Companies are more than willing to help you out to keep your business no matter what your income level is.
I hope this advise is of some help to you.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
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Aug 10 CD4 211 VL UD
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Offline BT65

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Re: Finally on disability, now what
« Reply #2 on: November 03, 2009, 05:54:56 am »

Welcome to the forums.  I have to say I'm surprised and saddened that you've had so much trouble with Aids organizations.  Usually, at least the one here, and the ones I've heard of, will help someone no matter their income. 

You said you're on LTD, but are you also on SSDI?  I'm wondering, because if you're on SSDI, then in a little longer than 2 years, you'll be getting into Medicare (I think the wait is like 30 months, but social security would be better to answer this).  I do understand about money getting tighter.  Have you ever applied for section 8/subsidized housing?  Or do you make too much to get help from government agencies?

The Aids organization should be able to tell you about support groups (those have no income requirements).  If you can get into one, that may help, to talk to other people in the same boat as you.  I've learned, in all the years I've been on SSDI, how to rob Peter to pay Paul, so to speak, and all the local food banks, how to get ahold of a senator's office should I have problems with government agencies etc.   No one really told me about these things; it's just something that comes with having to depend on systems for everything.  I wish you luck, and I hope we here more from you.
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Offline beau1200

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Re: Finally on disability, now what
« Reply #3 on: November 06, 2009, 11:41:49 am »
Thanks for the feedback.  I am not on SSDI.  I have amazing doctors that provide so many services.  I was told that if I do apply for SSDI, and would get medicare, I would not be able to continue to use some of the medical resources I have.  My doctor's office also has a pharmacy, which is very helpful.  They help me get med's that my insurance won't cover or hardly cover at all. 

I also found out that because I own a condo, and receive 60% of my salary, I am not eligible for help from some of the agencies that I have supported, and I am still volunteering for a youth group, teaching risk management and administering HIV testing.  I would like to think that I am helping young people with information and options. 

It's like you can't have any asset's in order to qualify for support.  Sadly I have started using my credit cards for expenses that my insurance doesn't cover.  I have had GREAT luck contact the credit card companies and lowered my interest rates.  Discover, for instance, dropped my APR to 1.99 for 24 months to help while I am disability. 

I am just surprised how hard things are when I feel like I tried so hard to plan ahead for this.  I thought there would be support groups, agency, place to go, when your HIV status hasn't taken it's toll and you end up on disability.  But I don't think that exists. 

I am going to continue to investigate this.  I need help organizing my expenses, insurance options, etc. 
Thanks again for your support.  If you hear of anything that might help, please pass it my way.  I will continue to search for options and will share them as I find opportunities that might help people in this situation.  I AM NOT GIVING UP!

Offline Miss Philicia

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Re: Finally on disability, now what
« Reply #4 on: November 06, 2009, 11:46:02 am »
Maybe if you stated where you live someone could make some suggestions for you.  It's hard to say much otherwise.
"Iíve slept with enough men to know that Iím not gay"

Offline beau1200

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Re: Finally on disability, now what
« Reply #5 on: November 07, 2009, 09:43:44 pm »
I live in Atlanta, Georgia.  sorry about that

Offline RedBear

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Re: Finally on disability, now what
« Reply #6 on: December 22, 2010, 05:23:37 pm »
Hey Beau,
        I just started receiving DIB.  I've been paying my credit cards on time even with limited income.  So my question is, even though you told them you were disabled, they lowered your intreats rate.  So do you still have use of those cards and how did it effect your credit rating?  I'm only asking because I'll be getting Medicare soon and with payments to Medicare part B&D...my income will drop and expenses for meeds will sky rocket, so the money would come in handy (besides with the recent melt down, the way CC companies have treated people, I wouldn't sticking it back to them for once).   
             Thanks, David
Finish each day and be done with it.  You have done what you could.  Some blunders and absurdities have crept in; forget them as soon as you can.  Tomorrow is a new day.  You shall begin it serenely and with too high a spirit to be encumbered with you old nonsense. 

Offline beau1200

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  • Posts: 17
Re: Finally on disability, now what
« Reply #7 on: April 11, 2011, 05:20:07 am »
Hello David,
Regarding interest rates being lowered, I just told the credit card companies the truth, which has been really difficult to admit to myself. I said that I was on disability and wanted to give them a head up that my needs and situation may change.  They mentioned that I had been a good customer and they could lower my interest rates due to my current circumstances.  They said that since most company recognized that long term disability was 24 months, they would start with that.  So for the next 24 months, they offered to lower my interest rate.  They asked me to call in or around the 20th month to give them an update and they will see what options they might have at that time.  I was shocked.  I am still able to use my credit cards.  I didn't think they would help at all.  Lowering your interest or even raising your interest doesn't affect your credit. 

I am now on Medicare as well.  I was told to stay away from "Medicare Advantage Plan", as its not really an advantage.  It's more like an HMO. I am in the Original Medicare Plan.  With this plan, if a Medicare pay a provider the "Medicare Approved Amount" the provider can only charge you up to 15% over the Medicare Approved Amount.  There are some limitations for medical supplies, and medical equipment. 

You mentioned payments to medicare, how much and why do you pay medicare?  Medicare is taken out of my Disability Checks, about $115.00. 
I have part A (Hospital Coverage) and B (Medical Coverage).  Part D covers prescription drugs.  You mentioned that you have part D, so I am not sure why the cost of your med's would sky rocket?  Maybe you can provide me with some details on that.  Why did you choose Medicare Part B & D?  There is also a plan with Medicare called "extra help".  You can get information and apply for "Extra Help" by visiting www.socialsecurity.gov.  I don't know that much about medicare part D. 

Sorry this was SO much information.  I had to learn a lot about this on my own and it's not that easy, so I hope I helped by providing some of this information.  I can't believe how hard it is to get information so that you can plan ahead and be as ready as possible if things changes with your health. I can only imagine what my grandparents had to go through, with limited resources, no internet, etc...

Let me know how you're doing.  I would really like to know.

mrobles38@comcast.net or you can reply to this email on this site.  I have to do a better job at checking this site for new email.
Take Care!

Offline beau1200

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Re: Finally on disability, now what
« Reply #8 on: May 13, 2012, 05:25:33 am »
Sorry I haven't responded to this forum.  Althought I checked the option to be notified when someone replied, I have yet to get any notifications. 

I apologize.

Offline Ann

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Re: Finally on disability, now what
« Reply #9 on: May 13, 2012, 10:11:13 am »

Althought I checked the option to be notified when someone replied, I have yet to get any notifications. 

beau, check your spam folder. Our automatic notification emails sometimes have a bad habit of landing there. If you do find them in your spam folder, be sure to put the email address on your list of permitted emails.
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Offline gadawg1979

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  • Posts: 142
Re: Finally on disability, now what
« Reply #10 on: May 25, 2012, 07:14:23 pm »
Not sure about ATL but we have two great ASO's that work together and are good at working together.  Check in there are tons of things out there like copay cards and such that can really help
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline Pilot

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Re: Finally on disability, now what
« Reply #11 on: July 05, 2012, 08:55:23 pm »
I have been giving a lot of thought about the future for a long time now.  I have five years before I can even consider retirement at 62 but with the resulting cut for early retirement it is really out of the question.  The only way I could possible survive would be with disability and I may have no choice since I have developed some form of neuropathy and the doc is not sure what is causing it but it is starting to have a effect on my daily work.

As I see it, with all the changes coming, we may have to find other poz people and band together in a living arrangement to survive.  I have a  house with three bedrooms.  So by finding others in our situation, we as a group would be better off financially


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