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Author Topic: Working while on SSDI-bad idea  (Read 9102 times)

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Offline BT65

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Working while on SSDI-bad idea
« on: November 12, 2013, 03:49:39 AM »
I have long been an advocate for people who are on disability and want to work part-time to supplement their income. Well, not any longer.

Back at the end of July, I got a packet in the mail from Social Security, asking all kinds of questions about my job, saying they are doing a "work review."  So, I filled it out, and sent it back.  Then a couple months later (yes 2 months), they sent my employer a wage verification statement, and it turns out I was $24 over SGA last November.  My employer looked back at time sheets, and it turned out I was accidentally paid for a holiday (Veteran's Day), last November, which is what put me over.  So, I got a letter from my employer stating that fact and sent it to SSA.

Well, I just got a letter last week stating I was not due a check last November, so I'm going to have to pay that back.  And, they "may" cut my benefit off.  Now, I have only been working part-time, and had letters from my doctor and employer stating I cannot work full time.  But, when reading what info SSA sent, it stated a person can be cut off from even a part time job if SSA believes they are doing "substantial" work, even if the person does not go over SGA.

What I do is work at an ASO.  I am a case manager.  I have helped clients that want more schooling, or job training, to get into vocational rehabilitation.  Now, I'm debating on telling them all not to plan on working so they can keep their benefits without any issues.

My doctor believes I should stop working and volunteer, if it means I could keep the benefit.  See, my meds run around $50,000 a year since I have other issues besides AIDS.  That would be impossible to meet that expense, especially since I can barely work part time, let alone full time.  Plus cost of labs, doctor visits, my quarterly Cortisone injections for my knees, etc.

I have gotten ill last weekend worrying about this and being so stressed out.  My chest is tight and noisy, and my sinuses are plugged.  I believe it's just a virus, though, and am not too worried about it.  But, this shit with SSA keeps happening (those of you who know me will remember the time they said I owed them a lot of money for months I should not have gotten a check, when it turned out I did not owe them a lot). 

So, I am seriously thinking about quitting my job if it means I can keep my benefit, and volunteering.  This morning, in a few hours, I am going to the SSA office to see if anyone can make sense of this. 

To those I've told to go ahead and go back to work- I deeply apologize.  I guess SSA does not want people to supplement their income when they're on disability.  This is the trap a lot of us long term survivors fall into-being too ill to work full time, could work part time, but are stuck in the system because the system does not want us to get a head at all.  To those I've told they can work when they say they cannot-I apologize. 

This has been a real eye-opening experience.  I will never again encourage anyone on disability to go back to work, unless they are sure they can handle full time work and can find a good job that will earn them a living wage and has good insurance. 

Just wanted to put this out there-if you've read the whole thing, you're doing better than I could lol.  Will keep those of you aware of this, updated on what happens. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hope_for_a_cure

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Re: Working while on SSDI-bad idea
« Reply #1 on: November 12, 2013, 05:08:34 AM »
I still get those pre-recorded messages (by phone) from the Ticket to Work program. 

Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #2 on: November 12, 2013, 01:00:43 PM »
Betty,

Was a suckfest. :( Our government at it's best. Ugh!

Best of luck to you getting them to see reason.

I really hate to see people treated this way especially someone like you who deserves so much more.

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

Offline darryaz

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Re: Working while on SSDI-bad idea
« Reply #3 on: November 12, 2013, 01:17:17 PM »
Thanks for the warning.  The holidays are always the busiest time for free-lance musicians.  So I will think carefully before I accept any gigs for the next couple of months!!!!

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #4 on: November 12, 2013, 01:47:22 PM »
Going down to the SSA office today was an WTF moment.  In the last letter I received, they gave me a contact name and said she was at my local office, which would be South Bend, IN.  So, I get there 1/2 an hour early, stand in line, then find out the woman is not there, she is in Baltimore lol.  The man I talked to went and talked to one of their caseworkers, who said they will most likely suspend a month's pay.  Which would be disastrous as far as paying things like, oh, rent, insurance (car, Part D, Medicaid for working disabled, renter's), etc.   

So when I got home I called the number for my contact person. She didn't answer the first time so I called back again right away and she answered.  When I was done talking to her I felt like I was going to have a heart attack.  She was asking about 2011 income, when I attempted to work full time and went off disability for several months.  Well, they have that income, as they get yearly income from the IRS.  She kept asking me "do you dispute the income we have for you from 2011?" (which was the year she kept asking about).  I kept arguing with her about me working full time and going off SSDI for several months and only going back on when I had to return to part time work. 

She said my benefits should have been suspended last November when I went over the $24.  I asked her about the "averaging," they can do, where they take the whole year's income into account and average it over 12 months.  She said they did.  I told her they couldn't have, or it wouldn't have been over. 

After arguing with her for several minutes (about 25), she finally asked if my job gave me any subsidies.  I asked her exactly what she meant, and she said some things like a job coach, extra breaks, extra time off etc.   I told her they did, which is basically true since I had to start work part time again.  She said she is going to send them some papers to fill out asking about subsidies and she will see what they send back.  She said the benefits "may" depend on this, but they still should have been suspended last November. 

This has been such a cluster fuck.  It all started in July, and now it's November and still isn't over.  I was considering quitting, and will if that's the only way I can keep the benefits.  But, when I told the lady I had a letter from my doctor about not being able to work, she said it wouldn't make a difference.

She said my job should get the letter by next week and should fill it out and send it back asap.  So, we will see......  When I got off the phone, I had to lay down because I was having a difficult time breathing regularly, with pains in my chest.  I knew it wasn't a heart attack, but rather stress because of this continuing saga with SSA, who doesn't seem to know what they're doing.

I will keep anyone who is interested updated.  While it does help to supplement income with a part-time job, the total nightmare of work reviews is barely worth it. 

Thanks, Mitch, for the kind words.  They're appreciated.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #5 on: November 12, 2013, 02:03:04 PM »
This thread has been my lunch-time reading. I'm stunned. Yes keep us abreast. I cannot believe this!  Is there someone at a higher level in SSA with whom you may speak AND will someone in accounting from your ASO help in your defense beyond the letter ?  And one of my other reactions is got any lawyer friends? There is no reason you shouldn't be compensated fairly for something you do well and be left alone to do it. I am simply slack-jawed. 

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #6 on: November 12, 2013, 02:29:24 PM »
No Em, I don't have any lawyer friends lol. 

I believe the lady I talked to on the phone is among the people who decide on continuing disability benefits.  So, we'll see.  Of course, if it is not favorable, I can appeal it.  But I will lose the check benefit, you can't keep that while appealing a decision like this (that's what I've been told).

I did send SSA a letter stating the reason I went over $24 was because of a holiday, not actual work, and re-iterated that to the lady today, but she said that doesn't matter.

Don't worry, I will keep everyone in the loop.

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

Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #7 on: November 12, 2013, 05:14:48 PM »
So the upshot seems to be if you (not your employer's accounting department) don't monitor every incoming penny ( despite the averaging you noted is viable and used --selectively perhaps? ) then if a singled out month is found to be over you cannot have that amount deducted from a future check AND you must forfeit the month of the offense and be exposed to threats of being dropped entirely.

So then your cortisol levels are jacked and your already overworked immune system taxed and people in need ultimately lose your talent and inspiration which is more curative than many medicines. There's gotta be someone involved with this forum or friend of a friend with lawyerly wits who can find out WTF is right and wrong about this.

My tax dollars are involved and so are everyone else's!!

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #8 on: November 12, 2013, 06:52:08 PM »
Whats happened to Betty makes me so mad I cant adequately express it . Although her case is not the only one its a prime example about all that is wrong with healthcare in America . She is not just an example she is also a dear friend .


Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #9 on: November 12, 2013, 06:57:19 PM »
Wow. What a stupid system! >:(

I am concerned about your health with all of this stress. I have no sage advice. :(
You have my support any time you need it you know.

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

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #10 on: November 12, 2013, 10:47:10 PM »
But I will lose the check benefit, you can't keep that while appealing a decision like this (that's what I've been told).
I'm sorry to hear you're being put through the bureaucratic wringer on this.

I've been told differently. I've been told that, any time the SSA decides to cut your benefits -and you appeal that decision, your benefits continue. The caveat is that if the SSA ultimately decides against you, you are on the hook for all those additional benefits, too.

I used to have some printed FAQ's about this from when I last checked into SSA's Ticket to Work program. There should be verbiage on SSA's website in the Appealing our Decision areas. I'm sorry to send you on your own chase, but I can't easily find a link at the moment.

I have had to quote SSA's own verbiage to it before. It's sad when you know more about a program than those who support it.

My tax dollars are involved and so are everyone else's!!

Yes, your tax dollars support the SSA. But BT65's benefits spring from BT65's own contributions to SSA. She paid into this program when she was able-bodied and working full-time, as does every other employed US citizen. This is not welfare, but an insurance program.
Reality is frequently inaccurate.

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #11 on: November 12, 2013, 11:01:20 PM »
I think Em was expressing how the folks at SS work for us and are paid by us with our tax dollars and her statement was in support of Betty .

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #12 on: November 13, 2013, 04:55:39 AM »
Yes, thanks for coming to my defense, Intaglio, but Em was just being supportive, as she always has been.  But I appreciate your words.

Jeff has been a huge support through this and I'm so grateful for him. 

I believe SSA may be pissed off since I've used the White House in the past, to deal with them on various issues.  One of my sisters said it's like they're being vindictive.  It sure seems like it.

Anyway, we'll see what happens next week when my employer gets the paper to fill out from SSA.  I'm going to have to talk to my two bosses today to see if they are even willing to fill it out.  Hopefully they will.  Of course even if they do, it's not guaranteed I will be able to keep the benefit.  We'll see.....
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

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Re: Working while on SSDI-bad idea
« Reply #13 on: November 13, 2013, 03:23:31 PM »
I was checking back in to see how it was going and my previous post is completely missing!  Anyways, hoping you the absolute best in this entire ridiculousness. 

The SSA does not support those who wish to contribute by working in any manner.  I've been a victim of the process and doubt I'll ever return to work permanently. 

Take care and best wishes.

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline britchick

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Re: Working while on SSDI-bad idea
« Reply #14 on: November 13, 2013, 04:20:15 PM »
BT65,
Im so sorry this has happenned to you.It makes me feel really angry.What does the govt want? We are penalised no matter what we do.If we try to work its wrong and if we dont try we are victimised.

I sent an email to our PM David Cameron last yr re this and actually got a reply.I will do it again too if I have to.

Im worried about you and your health.I hope you get the help re paperwork from your boss.Im thinking about you......the fact that you will still keep helping others speaks volumes about you.

britchickx

Offline WillyWump

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Re: Working while on SSDI-bad idea
« Reply #15 on: November 13, 2013, 05:13:26 PM »
Betty, dammit I'm sorry this is happening to you. Grrr. I dont have any advice on the subject but just wanted to say "hang in there" and I'm thinking about you.

-Will

Ps- Try practicing your relaxation breathing whenever you have to call SSA.
POZ since '08

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Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #16 on: November 13, 2013, 08:28:25 PM »
I think Em was expressing how the folks at SS work for us and are paid by us with our tax dollars and her statement was in support of Betty .

Yes, Jeff. That is precisely what I meant.  I can see how Intaglio read it another way.

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #17 on: November 13, 2013, 08:42:13 PM »
My apologies to you Em, for taking your words incorrectly.

I hang around another site whose users quite often equate SSDI with welfare in a negative manner. It was a knee-jerk reaction. I'm sorry.
Reality is frequently inaccurate.

Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #18 on: November 14, 2013, 06:08:39 AM »
Thank you--no need to apologize--I understand completely.

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #19 on: November 15, 2013, 10:12:06 AM »
I found this link.

Quote
What are some examples of IRWEs that can be deducted?

If you work, we may deduct your outĖofĖpocket expenses for items such as medicine, medical supplies, medical devices, service animals, and disposable items such as bandages and syringes when figuring the amount of your earned income.

We may also be able to deduct your outĖofĖpocket expenses for medical services such as doctors visits and some attendant care services charged for preparing you for work, attending to you while you are at work, or getting you to and from work. We may also deduct certain outĖofĖpocket expenses for transportation and modifications to your home, car, or van to allow you to work.

The expense must not be reimbursed, and must be related to your disability(ies) and needed in order for you to work.

So, for November 2012, your SGA limit was $1,000. But your earnings can be reduced by your out-of-pocket net-impairment work expenses. Your drugs cost you approximately $4,166/mo. So you could earn in November 2012, $5,166 and not go over SGA for that month.

SSA is quibbling over $24. Hopefully you can review your monthly out-of-pocket expenses and find $24 you spent last November that will make all this go away.

Here is a pdf off North Carolina's state website that goes into more detail about allowable out-of-pocket expenses.

I hope this helps.
Reality is frequently inaccurate.

Offline Schnauzer

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Re: Working while on SSDI-bad idea
« Reply #20 on: November 15, 2013, 11:40:47 AM »
I found this link.

So, for November 2012, your SGA limit was $1,000. But your earnings can be reduced by your out-of-pocket net-impairment work expenses. Your drugs cost you approximately $4,166/mo. So you could earn in November 2012, $5,166 and not go over SGA for that month.

SSA is quibbling over $24. Hopefully you can review your monthly out-of-pocket expenses and find $24 you spent last November that will make all this go away.

Here is a pdf off North Carolina's state website that goes into more detail about allowable out-of-pocket expenses.

I hope this helps.


Yes, your tax dollars support the SSA. But BT65's benefits spring from BT65's own contributions to SSA. She paid into this program when she was able-bodied and working full-time, as does every other employed US citizen. This is not welfare, but an insurance program.

Hey Intaglio,

Thanks for the informative and intelligent posts.  I appreciate them greatly.
One good turn gets most of the blankets.

Offline JR Gabbard

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Re: Working while on SSDI-bad idea
« Reply #21 on: November 15, 2013, 12:23:58 PM »
Hi BT!  Sorry you're going through this.
Bad news first.  Even though the extra $24 didn't come from hours you spent working, it still counts as earned income because it came from your employment.  That will include any other cash benefit you've received or will receive, which might be what SSA's new inquiry is about.  You can deduct your own out-of-pocket disability related work expenses.  You can't deduct the cost of your medications, though, except possibly to the extent you pay for them yourself.  That deduction is related more to Medicaid and SSI eligibility and share of cost determinations.  End bad news!
If SSA does try to stop your benefits (doubtful, but I don't know everything), you can keep them going by filing an immediate appeal and not abandoning it (file all requested documents, meet all deadlines, keep appealing denials, or better yet get a rep to do it for you!).
The bit you found about SGA when you work less than 20 hours per week applies to people who have a substantial involvement in a business, and mostly just applies to owner/managers.  I've never seen it applied to part-time labor.
Have you thought about cutting your hours back (as opposed to quitting altogether)?  That might solve a few problems, or at least create fewer new ones.
Best of luck!!
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The minor fall, the major lift,
The baffled king composing Hallelujah!

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Offline 2tcells

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Re: Working while on SSDI-bad idea
« Reply #22 on: November 15, 2013, 12:47:34 PM »
Other things to remember on ssi, if u ever have over 2000 in resorces on the 1st of the month you dont get paid for that month, this includes how much cash they say you have. When they ask you how much cash you have that 1 day you talk to them and u say 200 bucks they assume you have 200 bucks everyday of the year. They also deposit my money 2 days early before the 1st of the month to screw me most times. If u owe them backpay they will take it out like 100 bucks a month until you pay them back. Dont every call them or go there because they will try to find more reasons to get you off ssi. If you have anything worth more than 2000 dollers I.e. a tv, jewlery anything except 1 car and 1 house you live in that counts as reasorces and you wont get paid as long as they know you have it. I could go on for days they have done it all to me before. If ur going to get any money from them they want you to be poor and hungry the rest of your life.
7-4-13 diagnosed cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
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Offline wolfter

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Re: Working while on SSDI-bad idea
« Reply #23 on: November 15, 2013, 12:54:41 PM »
2tcells, I believe Betty receives SSD so the assets provision doesn't apply.  SSI is a needs based benefit for those who didn't pay enough in to receive SSD. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline 2tcells

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Re: Working while on SSDI-bad idea
« Reply #24 on: November 15, 2013, 12:59:38 PM »
Thats good she dosnt have to worry about all that stuff then, but I still think soc sec department is trying to kick anyone off they can
7-4-13 diagnosed cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud yay!
8-5-14                     cd4- 95    vl-ud boo

Offline Snowangel

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Re: Working while on SSDI-bad idea
« Reply #25 on: November 15, 2013, 04:27:40 PM »
BT- Geez!  What a mess! I appreciate the heads up. If it makes you feel any better I am in the same boat right now, as far as social security messing with me. I would not be suprised if they are trying to get back at you. I recently spoke to a lawyer that volunteers at our local ASO and he was having that feeling with what happened with another client and then what I was telling him of my situation kind of confirmed it for him.  I have been trying to figure out what I can do to earn enough money to support myself and my children. I guess getting a job is out of the picture.

I recently started renting my grandmothers house for 2 reasons. 1. I had tried homeschooling my little ones and was having trouble getting the right services OT, S & L for them, the local district was no help. My oldest was still in public school and they were in non-compliance with his IEP. I had to file charges with the DESE which is a joke. 2. Their father was not helpful, let just leave it at that.

Last year I applied for social security for the little ones and they each got it on the first try. I am on SSDI and all my kids get a small amount through that. The kids father is still staying in the house that is in my name.  In August, I let social security know I would be moving in Sept. In Sept. I got a call from social security for a review and she let me know the kids would no longer be eligible because the house I no longer live in is considered an asset?  Fine, I get that, I don't understand how they can take benefits away immediately but whatever. Then a few weeks later I get overage letters for each kid for the month of Sept? WTF?


 Have you filled out the SSA-632- BK form yet?  You can go to the social security website and print it off, it is 8 pages long. I have to fill it out 3 times and haven't tackled it yet. 


I am kind of confused by the whole situation-yours and mine- because it does not make any sense to me. How can they take away a whole months worth of benefits for an overage of $24?  I just moved on Aug 26, do they really think I can sell a house in 5 days?

I guess I should consider myself lucky that they did not go after me 2 years ago when I worked at my kids school part time? In my case, I think everything happens for a reason, if I did not have that job I would not of known of the bullshit going on in school these days or found out that my kids had disabilities that they do.  Luckily, I worked a lot before getting sick and get a pretty good benefit but not near enough for 5 people. I am at a loss for what to do? I can't take my kids out of school, they are finally progressing and starting to feel good about themselves. Our old district is a hot mess, they can't handle the children with behavior issues(our city is actually the worse in the state) never mind the children with learning disabilities. Right now I should be concentrating on them and writing 4 IEP's but instead I am trying to figure out how to survive. My stress level was off the charts before I moved and this is only making it worse. I tried to get a modification on my other house but I don't qualify because I have not missed a payment and she told me I have to cut my expenses, like food? I have nothing left to cut at this point. I guess we are dammed if we do and dammed, if we don't.

I wonder if the regulations are different for each state, it seems like if you make less than $1000 bucks, you should still be allowed to work, get benefits and file an appeal for the $24 thing.  I am sorry you are going through this, it royally sucks!

Thank you for the info and keep us posted!


Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

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Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #26 on: November 16, 2013, 05:56:57 AM »
First, SGA for last year was $1010.  Second, I am familiar with IRWE's.  Unfortunately, since my insurance covers everything, I don't have any, other than maybe mileage and what I pay for the Medicaid for working disabled, yes I do pay a premium for that.  Also, according to SSA, anything paid out of pocket for meds does count as an IRWE.

Also 2cells, Wolfie is correct, I receive SSDI, not SSI. 

I'm waiting on my employer to get the information from SSA regarding any accommodations I get for the job.  The lady at SSA told me to tell my employer to expect it early next week but knowing SSA, it probably won't get here for another 2-3 weeks lol.  So, everything on hold until then.  I will keep everyone updated on this ongoing debacle.
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Offline Theyer

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Re: Working while on SSDI-bad idea
« Reply #27 on: November 16, 2013, 12:20:05 PM »
Betty dear heart I am hampered by lack off knowledge about your systemBut I am having similar problems as the UK is scrapping the benefits I was awarded for life .

So all disabled people in the UK are filling out the forms ,making the appeals, There has been some court cases that have help.The gov has this mono mantra that its about helping us to find work .Pure bullshit.

Anyway I have received very effective support from a local council politician,  the general efficiency improved no end , I fully intend to engage my member off Parliament ---M.P. if things get sticky. So finally my point is there an equivalent route for you ? Will any politician intervene over this ridicules overreaction to 24 dolls

What I am also confussed by is what responsibility does your employer have in "over paying " you ?

I apologize in advance if it,s a no starter.

Hugs
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #28 on: November 16, 2013, 04:52:27 PM »
Thanks, Michael.  Of course I have contacted people in government and apparently there's only so much they can do.  I believe SSA may be pissed off at me for getting the White House on them before, so may be trying to fuck with me any way they can.

JR, you keep saying something about getting a rep-what is this?  A lawyer?  I'd never heard of one, and talked with a case manager who assists people on disability going back to work, and she'd never heard of one either. 

Also, in order to be considered part-time at my employer, one has to work at least 20 hours.  So, I cannot reduce my hours.  I can take a reduction in pay, that would avoid overpayment in the future and that may be what I do.   

Right now I'm waiting on my employer to get the paperwork from SSA about "subsidies," which the lady said they should be expecting this upcoming week.  Of course, knowing SSA, that could mean two weeks.  But I do expect to hear something definite from SSA before the end of the month, or at least before Christmas.  This is just not the time of the year to be dealing with financial shit.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline JR Gabbard

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Re: Working while on SSDI-bad idea
« Reply #29 on: November 19, 2013, 05:44:07 PM »
"Rep" is short-hand for representative or in SSA terms "Authorized Representative."  It is anyone, attorney or non-attorney, whom you designate to work with SSA on your behalf.  You can have a "rep" any time you have to deal with SSA, including initial applications, appeals, disability reviews, and any time they are trying to determine whether your income exceeds SGA to reduce your benefit or kick you off.
I PM'd you back  :)
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Offline jkinatl2

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Re: Working while on SSDI-bad idea
« Reply #30 on: November 21, 2013, 12:58:59 AM »
My takeaway from threads like this one and the one by Alan in LTS makes me think that it's almost never a good idea to do anything "over the table" once designated disabled, or else the whole house of cards can come down at any time. It seems hardly "transitional" to have a shitstorm of epic proportions, including losing housing, access to treatment, and a guaranteed (albeit poverty level) income hover over your head all the time - especially if you have been out of the workforce for a decade or more, as many of us have.

It was bad enough when we were all limping along with first gen meds. Now? We might get to spend 40 years in these prisons. There needs to be a better way.

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Offline wolfter

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Re: Working while on SSDI-bad idea
« Reply #31 on: November 21, 2013, 11:33:32 AM »
I am torn over this.  It seems like we have a moral obligation to work as much as possible, yet the system makes it difficult to do so.  My goal was always to return to work whenever I was on disability.  Each time I was on it, it was short term and I anxiously awaited for the day I could continue working.

Perhaps my age dictates that I don't have the strength to fight this system the way it plays out now.  I'd be lost without this buffer and the idea of figuring out what I'd have to earn to cover the benefits that I receive now is astonishing when you figure in medical coverage, work related expenses, loss of benefits...etc

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #32 on: November 21, 2013, 04:34:33 PM »
I feel the same way, Greg, about needing to work as long as possible.  However, as JK says, the whole cloud of disability can go up in smoke. 

SSA told me they are going to send something to my employer, about any accommodations I get.  They (employer) was supposed to get it the first of the week and have not gotten it.  :P   So, I"m just waiting....everything's in limbo.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: Working while on SSDI-bad idea
« Reply #33 on: November 26, 2013, 03:07:40 PM »
I am very upset that this has happened to you, honey.   What a nightmare.   I have been 'reviewed' several times by Soc Sec.   I also receive SSDI, and work part-time.  I have ALWAYS been above board, and reported everything to them.   However, it is never enough, and they always seek more "information".   The funny thing is, since I went on SSDI in 1995 (my God, has it been that long ago?)  they have never asked me ONE single thing about my health.   Only about the little amounts of money I have earned.

I'm afraid I would have to join you in advising others on SSDI to not have any 'reportable' income.   I have always felt (and my doctor agreed wholeheartedly) that we needed SOMETHING worthwhile to do, to make us feel like human beings who are productive, and have something to get up in the morning for.   I have worked, part time, since 1998.   In 2000, I 'gave up' Social Security and decided to attempt to return to work full-time.   I held out for 10 months (and I was in much better shape, physically, then) before I decided I couldn't handle the stress of it any longer.   Thankfully, I had no problem re-starting my SSDI.  In fact, the SSA was extremely helpful to me, allowing me to collect 3 months of benefits, even after I had started working full time!   I thought they were more than fair.   Of course, times have changed a LOT since then.   The problem is, in so many professions (I'm an accountant) there is no such thing as a 40 hr week anymore.   There are always deadlines, monthly closings, quarterly closings, annual closings....40 hrs quickly turned into 60 hrs.   I hated to admit it, but NO, I could not keep up that pace -- mentally or physically.

My best friend of 36 years became ill last fall; he was diagnosed with colo-rectal cancer.   Of course, he was no longer able to work the job he had worked, in retail.  He lost down to 112 lbs (at 6'2"), went through chemo and radiation, had a colostomy, and was in and out of the hospital this entire year.   Yet when he attempted to apply for SSI, he was DENIED.   The reason given was that his illness wasn't expected to last for 1 year.   Well, he  still needs more chemo, only weighs about 120, and has absolutely no energy at all.   There is no way on God's green earth that he could work.   Still, he is refused.  He has had ZERO income since Nov 2012.  He applied for food stamps, and was granted them, but STILL could not get SSI.   The Social Security Administration doesn't WANT anyone to qualify for SSI or SSDI, therefore many do not (especially those who are not strong enough to fight).

So I join Betty in suggesting that if you are on any type of Social Security (and maybe even private disability policies, which I have heard others speak of) it is not a good idea to tell them you are able to work AT ALL.  If you can get paid 'under the table', that's great...but if not, think about volunteering.   The threat of having your livelihood snatched away, for a small amount of money (in Betty's case less than $25) is simply not worth it.   My friend Joe who lives in Atlanta has gone through a similar ordeal over the past couple of years; them threatening to force him to PAY BACK an entire year of benefits, because he went over one month.   It is pure bureaucratic INSANITY.   

Betty, you're in my prayers honey.

Much love, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #34 on: November 26, 2013, 04:07:26 PM »
Yeah I know what you mean Betty & Alan, just this past yr. I was offered a job @ Metro Detention Center of New Mexico (transporting prisoners to doctors visits in a Govt. Van)

so, I turned it down (due to the fact that it was the same rate of pay as my entire monthly income)

also, not only would I loose my SSDI, but my other pension as well, ( it wouldn't have taken me long to have a large SSDI-over-payment)

it kinda sucks, that for such a very low amount of overage, SSDI does things types of things to good people

and I do understand that SSDI is suppose to be about disability ( meaning you cannot do work what you did before you become sick)

however it still doesn't make it right, our Govt. is all mess-up, and i hope that they can fix some of these out-dated rules, your kinda dammed if you do, and poor as hell if you don't  :(

oh, and  that other thing you said, 40 hrs turns into 48, then into 60hrs or more, I just wasn't ready to do that again, with all of the joint inflammation that I currently have :-[

good to hear from ya Alan  ;)

HUGS

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

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #35 on: November 27, 2013, 03:12:46 AM »
Thanks, Alan.  I attempted to work full time in 2011, and went off disability, but when I could not handle it after several months, I had no trouble getting back on.  But now, I'm having a hard time just trying to keep the benefit.  I have a letter from my medical doctor saying I should not be working at all. 

It's so stressful it's hard to relax over the holidays.  Knowing that the majority of your income could be gone, plus healthcare, and we all know how expensive a long-term survivor's healthcare is, is hell. 

I'm going to try to have a good Thanksgiving, and not contact SSA for a while.  We'll see.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #36 on: November 27, 2013, 06:07:51 AM »
They somehow manage to make living with a disability more hellish than it already is .

Betty , I wish the world knew your whole story about how far you have come in the last 10 years . Your story makes the difficulty's you are having even more disheartening and hard to accept .

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #37 on: November 27, 2013, 07:06:52 PM »
They somehow manage to make living with a disability more hellish than it already is .

Betty , I wish the world knew your whole story about how far you have come in the last 10 years . Your story makes the difficulty's you are having even more disheartening and hard to accept .

Thanks babe.  I just don't trust them, nor will I ever.  I was advised that from now on, I should take copies of my paystubs to my local office.  Once this is over, if it ever will be over.

I appreciate your words, though, they mean a lot. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Habersham

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Re: Working while on SSDI-bad idea
« Reply #38 on: December 11, 2013, 08:21:15 AM »
I know this won't be a popular opinion but here goes. If you receive any kind of "assistance" (and I get most) write down the limits for all and do not go over them. Keep good records and leave yourself room for error. If your limit for something is $400 a month don't have more than $250 in earnings. Do not try and have $399. I know this is harsh but we have to work within the rules.

I'm not saying the parameters are the best. I hate this phrase but it is what it is.

Because I Can

Offline darryaz

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Re: Working while on SSDI-bad idea
« Reply #39 on: December 11, 2013, 08:43:11 AM »
Here's a question.....

I've taken a couple of out-of-town jobs recently that reimbursed mileage. 

Does mileage reimbursement count toward your total income allowed for the month?  (on one job my mileage reimbursement was actually more than my pay for the job).

Offline Habersham

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Re: Working while on SSDI-bad idea
« Reply #40 on: December 11, 2013, 09:11:23 AM »
The simple answer is no.

However, your payroll/accounting department needs to be doing their job right. Reimbursements need to be listed separately from earnings. These amounts are not subject to payroll taxes and thus are not reported as earnings. They should not appear on your W-2 or 1099 form.

Because I Can

Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #41 on: December 11, 2013, 09:48:58 AM »
earnings = income gained from work. The issue as far as I know is ability to work, not assets for SSDI, meaning you can receive monetary gifts from family members and this not effect anything. Of course family members are limited to $10,000/year without their paying any taxes on this.

ps: people on SSDI also need to pay attention to whether or not the state they reside in considers benefits taxable or not
« Last Edit: December 11, 2013, 09:51:03 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #42 on: December 12, 2013, 04:12:06 AM »
Darry, Habersham is correct on the mileage issue-I get mileage for my job, and it is not taxable, therefore not reportable. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline darryaz

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Re: Working while on SSDI-bad idea
« Reply #43 on: December 12, 2013, 09:01:26 AM »
Thanks for the confirmation Habersham, Miss P and Betty!!!!!  :D

Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #44 on: December 15, 2013, 06:30:07 PM »
http://www.aidsmeds.com/articles/employment_adherence_1667_24937.shtml

From POZ

The benefits of work related to adherence.

Offline darryaz

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Re: Working while on SSDI-bad idea
« Reply #45 on: December 15, 2013, 08:09:03 PM »
http://www.aidsmeds.com/articles/employment_adherence_1667_24937.shtml

From POZ

The benefits of work related to adherence.

This totally makes sense to me.  When I've got lots of things going on (whether it's work, volunteer work or family responsibilities) I'm far more motivated.

Reminds me of this quote from Lucy:

"If you want something done, ask a busy person to do it. The more things you do, the more you can do."
-Lucille Ball

Offline drewm

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Re: Working while on SSDI-bad idea
« Reply #46 on: December 15, 2013, 08:24:55 PM »
Thank you LTS'rs for these posts! Your advice is duly noted and MUCH appreciated.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Schnauzer

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Re: Working while on SSDI-bad idea
« Reply #47 on: January 06, 2014, 07:42:46 PM »
Hello Betty,

Was there ever any resolution on this SSDI issue?  You haven't posted on this topic since mid-Dec.  I hope it's been cleared up to your satisfaction.
One good turn gets most of the blankets.

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #48 on: January 07, 2014, 03:54:02 PM »
Hello Betty,

Was there ever any resolution on this SSDI issue?  You haven't posted on this topic since mid-Dec.  I hope it's been cleared up to your satisfaction.

No, it's not done yet.  They're trying to get me off anyway they can.  It's extremely stressful.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #49 on: January 07, 2014, 05:51:34 PM »
No, it's not done yet.  They're trying to get me off anyway they can.  It's extremely stressful.

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

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #50 on: January 07, 2014, 06:18:03 PM »
Betty, don't let them take away your SSDI you worked for that, and it's VERY HARD to get now-a-days

unless your current job can pay you more than your SSDI is each month

I wouldn't EVER give it up


HUGS

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

Offline TnMan62

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Re: Working while on SSDI-bad idea
« Reply #51 on: January 08, 2014, 08:16:59 PM »
As one who has been out of the workforce for a number of years now, I am feeling "stuck" in the system. I have thought about trying to go back to work, even part time, but, fear that I would lose all the current benefits I get with SSDI.  I have discussed this with my healthcare provider, who suggests I stay as is... on a fixed income.
I understand there is a Ticket To Work Program/a "trial" work period. All this sounds well and good, except, in the event that I went back to work, and am unable to maintain, will SSA then come back and say that I am no longer eligible for SSDI? Then, there goes all the other benefits...Medicare, part D, etc. Am I correct that this is how working while getting SSDI works?? Or, can I work as long as I do not go over a certain amount?
I was given a prognosis of 5-7 years back in 1991, when I tested positive. After much thought, and due to HIV related illness, I decided to leave my job, take disability, and wait to die! But, here I am 23 years later, at age 52, still alive. Don't get me wrong, I am grateful to still be here, but, I  struggle with how my life is, as someone, who would rather work if possible. Yet, running the risk of losing all benefits, and then where would I be???? Its a tough situation. I have learned to swallow my pride for sure.

Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #52 on: January 08, 2014, 10:23:58 PM »
As one who has been out of the workforce for a number of years now, I am feeling "stuck" in the system. I have thought about trying to go back to work, even part time, but, fear that I would lose all the current benefits I get with SSDI.  I have discussed this with my healthcare provider, who suggests I stay as is... on a fixed income.
I understand there is a Ticket To Work Program/a "trial" work period. All this sounds well and good, except, in the event that I went back to work, and am unable to maintain, will SSA then come back and say that I am no longer eligible for SSDI? Then, there goes all the other benefits...Medicare, part D, etc. Am I correct that this is how working while getting SSDI works?? Or, can I work as long as I do not go over a certain amount?
I was given a prognosis of 5-7 years back in 1991, when I tested positive. After much thought, and due to HIV related illness, I decided to leave my job, take disability, and wait to die! But, here I am 23 years later, at age 52, still alive. Don't get me wrong, I am grateful to still be here, but, I  struggle with how my life is, as someone, who would rather work if possible. Yet, running the risk of losing all benefits, and then where would I be???? Its a tough situation. I have learned to swallow my pride for sure.

TnMan,

I'm about to (hopefully) get on disability next summer. (poz since 1982) While our lives have been very different I was most struck by your last sentence.

Swallowing pride is tough. I have learned that I can no longer do what I thought I would be able to do yet I want to do more. Does that make sense? You seem to be in a better place than I at the moment. Physically and mentally. Just a guess.

While I would never want to discourage anyone from working, the system can make it difficult. Your future benefits could be at risk. Seems like these days we really don't know what changes are in the winds due to our lovely elected officials. Caution should be our word of the year. I'm not sure what state you live in but that may be of some help or hindrance.

Maybe you could feel productive in other ways or even earn an income under the radar. I'm sure you already thought of this but...

Looking forward to hearing where you go from here in any case.

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

Offline RapidRod

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Re: Working while on SSDI-bad idea
« Reply #53 on: January 09, 2014, 09:44:28 AM »
As one who has been out of the workforce for a number of years now, I am feeling "stuck" in the system. I have thought about trying to go back to work, even part time, but, fear that I would lose all the current benefits I get with SSDI.  I have discussed this with my healthcare provider, who suggests I stay as is... on a fixed income.
I understand there is a Ticket To Work Program/a "trial" work period. All this sounds well and good, except, in the event that I went back to work, and am unable to maintain, will SSA then come back and say that I am no longer eligible for SSDI? Then, there goes all the other benefits...Medicare, part D, etc. Am I correct that this is how working while getting SSDI works?? Or, can I work as long as I do not go over a certain amount?
I was given a prognosis of 5-7 years back in 1991, when I tested positive. After much thought, and due to HIV related illness, I decided to leave my job, take disability, and wait to die! But, here I am 23 years later, at age 52, still alive. Don't get me wrong, I am grateful to still be here, but, I  struggle with how my life is, as someone, who would rather work if possible. Yet, running the risk of losing all benefits, and then where would I be???? Its a tough situation. I have learned to swallow my pride for sure.
Read carefully the "Right To Work Program" info. It doesn't take much to put your ass in a bind.

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #54 on: January 09, 2014, 10:10:28 AM »
I agree with Rod . Its important to note that the ticket to work program is not specifically a program designed so that people on disability can work and earn money . Its end goal is to help you return to the work force full time and get people out of the system .

I'm not saying people haven't successfully used the program to help make ends meet financially but as Rod pointed out there is plenty of room to get yourself in a bind and once SSA has you under scrutiny you can end up like Betty in SSA purgatory wondering whats next .     
« Last Edit: January 09, 2014, 10:15:07 AM by Jeff G »

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #55 on: January 09, 2014, 10:36:09 AM »
I currently have so many health problems that according to SSA, I'm unempolyable
and that was 16 yrs ago, now I have even more health problems, so yeah, going back to work has never been an option for me 

Rod has a very good point about being
in a bind w/ SSA, I know a few people like betty that is going thur this right now....
and there are also other(s) in the very forum that has done this and gone thur all of this hell w/ SSA before

DEN

HUGS
"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: Working while on SSDI-bad idea
« Reply #56 on: January 09, 2014, 10:38:39 AM »
The problem with these programs is that they are a bad fit for someone with HIV, and obviously were not designed for us. Think about SSDI as a whole -- I think back pain is the biggest portion of people on it, so maybe after a while they're back pain is tolerable and/or they can find a job that doesn't involve this.

For someone with HIV it's generally more like you are ill when you go on SSDI, but then in a few years my get better enough to be up to 60% of where you were previous to disability, or maybe even better. But then you may (theoretically) work a couple of years and develop some new issue you didn't have before, and so on and on. I believe the program is called "Ticket to Work" and it's just designed to accommodate a person who may have to go back and forth on full or partial disability.

Honestly, you're better off IMO doing volunteer work -- unless of course you're really stretched for money and can find some place that will pay you cash for 10 hour of work each week.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: Working while on SSDI-bad idea
« Reply #57 on: January 09, 2014, 12:49:49 PM »
Honestly, you're better off IMO doing volunteer work -- unless of course you're really stretched for money and can find some place that will pay you cash for 10 hour of work each week.
^ this!

I've been in the same boat as others - sick, then better, then sick, then better. I even went to work for a while. But when SS corrected their accounting of my hours and earnings 4 yrs after I had quit work again and gone into the hospital, my disability was cut by 1/3 for 3 yrs and I lost my utilities, my car and my home.

that taught me the hard way to forget about ever trying to get a "real" job again. I'm getting too old now, been unemployed too long, and have the experience of knowing that going back to work usually puts me back into the hospital within  a yr or two.

feeling well and not working sucks; but being sick in the hospital sucks too. Being poor sucks; but being homeless sucks even more. So you have to find a way to thread the needle. I have stable housing; but I don't have much spending cash. (going to wendys one time IS my big eat-out meal each month) I don't get paid for the work I am doing with my ASO and state task force; but it gets me out of the house, fights against the depression and helps a bad situation in my state and nation.

Sometimes when I do peer counseling and the new client seems really interested in getting diasability, I caution then about the problems of being long-term disabled by HIV. Knowing my own story and hearing the tales of others, it just seems that long-term disability from HIV can be a life with boredom and poverty. You can fix the boredom with volunteer work; but the unless you can get a job paying under the table or a job for a limited amount of money, being poor is a hard issue to change - and still keep medical benefits.

Of course though, being alive, bored, and poor is a heck of a lot better than being dead  ;)
leatherman (aka mIkIE)


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

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #58 on: January 10, 2014, 09:03:04 AM »
I've been disabled since 1999. I was awarded SSDI in 2002. My disability stems from a TBI suffered in an auto accident.

Prior to being disabled, I was working in publishing doing computer support. Around 2005, I looked into Ticket To Work, as I wanted to see if I could ease myself back into the workforce.

At the time, if I earned over $540/month -or worked over 140 hours a month, in nine months out of sixty months, I'd lose my SSDI. I'd then have to pay my Medicare premium out-of-pocket to keep it. I could go back on SSDI any time in the next thirty-six months (three years) following my ninth month of exceeding $540. If I did, my benefits would automatically be restored and Medicare would once again be paid for by SSA. Now, if for some reason, I was able to work for thirty-seven months and then need disability, I'd be back at square one, needing to reapply.

I had several problems with this.

1) -I'd have to earn over $2,000/month to replace my SSDI and pay for comparable insurance -mostly the insurance premium. I could not see a way I could go uninsured as I was and am still dealing with neurological issues.

2) -I could easily find a job that would take me over $540/month. Unless I really lucked out, finding a job that would pay me $2,000 a month -and accommodate my neurological issues would be practically impossible.

3) Once I hit nine months, unless I was pulling $2,000, I would take a major financial hit, having to support myself on whatever I earned -and now having to pay for all my medical expense out-of-pocket or paying major insurance premiums. I'd be worse off for having tried to better my financial situation.

4)The sixty-month period was a rolling period. The counter started the first month I exceeded $540, then reset the next month I exceeded it again. But the nine months started from the first time I exceeded $540. Tricky tricky tricky.

I queried SSA about running my own company. I knew that even if I could not work 40 hours a week, I could contract services and work as little as I needed to -and still make a little money.

The situation was even more bleak. If I worked over 20 hours a week as my own boss, no matter how little I earned, I could be on my own in those same nine months. The rules were even more strict for being your own boss.

If I didn't work 20 hours a week -and my business made more than $540/month, I'd still trigger the limits and be eligible to be kicked off SSDI. This was disappointing as, at the time, I could set up several online processes that required me to do little work, but would generate significant income.

I also saw the way Ticket To Work operated. It's actual operation was contracted out to companies. You signed up with a company and they (ahem) helped you succeed at your goals. The problems I saw with this, was these companies only got paid if you succeeded. So they had a lot of incentive to make you appear to be able to succeed even if you weren't capable.

I saw a lot of discussion online where these programs failed their initiatives. The people who availed themselves of the services were left no better than before they started. Only, since the company signed off to SSA they were capable of working, the clients found themselves embroiled in red tape with SSA. Many of them found SSA trying to declare them no longer disabled -because they had participated and "succeeded" in a Ticket To Work program.

So I abandoned the idea of going back to work.
Reality is frequently inaccurate.

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #59 on: January 10, 2014, 10:29:55 AM »
Well w/ SSA's SSDI your actually 100% disabled or your not

according to SSA, my primary disability is Post-traumatic stress disorder (PTSD) Impairment code (2960)
 
my secondary disability  is HIV-infection/Symptomatic HIV/AIDS w/ 2 IO's  Impairment code (0430)

I went to SSA last week and ask them for this info, so that I could show the VA all of this, and that is what SSA told me.......

I don't wanna highjack this thread but, my point is ^ this

if you go back to work your telling SSA that you aren't disabled anymore and your well enough to work

so that's why your SSDI will be in jeopardy w/ SSA,  you simply cannot have it both ways, as SSDI really isn't de∑signed that way

bottom line, your better at NOT going back to work


HUGS

DEN
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Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #60 on: January 11, 2014, 07:52:50 PM »
I don't wanna highjack this thread but, my point is ^ this

if you go back to work your telling SSA that you aren't disabled anymore and your well enough to work

My primary disability is neurological damage exacerbated by previous concussions. The neurologist who originally diagnosed me told me there was a possibility my brain could rewire itself eventually. I could regain the neurological functioning I had lost. (It hasn't happened). So for the first few years, I hoped to be able to once again function normally (ha!).

I just was surprised at how little income it took for someone to lose their disability. When I first checked into the program I figured there'd be precautions against someone being worse off by trying to get back off SSDI and back into self-sufficiency. Nope.

I earn the equivalent of half my previous wages by being on disability. Plus I get Medicare coverage to boot. If I had to live on my own in this area of the country, I could easily do so. I couldn't survive on either coasts, but here it would be manageable.

SSA considers me permanently disabled.  I still get periodical mailings telling me that I am eligible for Ticket-to-Work.
Reality is frequently inaccurate.

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #61 on: January 11, 2014, 08:31:22 PM »

I earn the equivalent of half my previous wages by being on disability. Plus I get Medicare coverage to boot. If I had to live on my own in this area of the country, I could easily do so. I couldn't survive on either coasts, but here it would be manageable.

SSA considers me permanently disabled.  I still get periodical mailings telling me that I am eligible for Ticket-to-Work.

I could easily live on my own, w/ my SSDI if I wanted to, but being alone isn't fun
and 2 people is always better than yourself, even a stray cat is better than nothing
lol...yeah after 16 yrs. I still get those dumb Ticket-to-Work phone calls & mailing
I don't know why they even waste the time to do this....lol I'm gonna be 60 yrs. old
in a few yrs. what's the point

HUGS

DEN
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Offline GablesD

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Re: Working while on SSDI-bad idea
« Reply #62 on: January 12, 2014, 10:55:42 AM »
BT65, I feel for you.  I, also, have had my 'go rounds' with SSDI.  I got call on the carpet for doing volunteer work!  I was told that if I could regularly perform volunteer work then I could return to employment and get off disability.  Also, lets not forget that little known caveat....once you start ANY work, the clock starts ticking.  Once you accumulate a set amount of time, (I think 9 months), then they have the option of discontinuing benefits.  I, like you, have other health issues that keep me from working but I find I have no choice but to look for 'under the table' opportunities to allow me to purchase frivolous items like, say, FOOD and MEDS

Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #63 on: January 12, 2014, 11:15:24 AM »

I earn the equivalent of half my previous wages by being on disability. Plus I get Medicare coverage to boot. If I had to live on my own in this area of the country, I could easily do so. I couldn't survive on either coasts, but here it would be manageable.

There are people "on the coasts" that live on SSDI and seem to make it work, you know. Even single ones. What's "on the coasts" even mean here? New York City? Salisbury, Maryland? Rural Maine?
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Offline darryaz

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Re: Working while on SSDI-bad idea
« Reply #64 on: January 12, 2014, 01:09:47 PM »
Your monthly income on SSDI is based upon how much you paid in Social Security taxes while you were working.  If you worked "on the coast" for a higher salary you should do fairly well on SSDI.

Most of my working life I was "on the coast" and paying into Social Security at a fairly high rate.  Once I started on SSDI I moved to an area with a lower cost-of-living.

(Actually I moved to the area with THE VERY LOWEST cost of living in the U.S.
http://www.huffingtonpost.com/2014/01/07/2014-most-affordable-cities_n_4554763.html)

Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #65 on: January 12, 2014, 01:19:26 PM »
My point was that "on the coast" seems to be meaning in a major metropolitan area of the Northeast corridor - DC/Philly/NYC/Boston.

If you've not lived in the area there are (obviously) other places in between and on the fringes of these areas that are affordable, IF YOU ARE INSISTENT on a auto-centric lifestyle in surroundings consisting of single family detached housing.

But even in the cities, there are (obviously) non-affluent people that live there. If you are on SSDI and want to live in such a city you have to compromise -- meaning not owning a car (saves a lot of money!) and having a quite small apartment (you learn not to buy useless plastic crap from China at Walmart every other day), etc. And large northeastern cities are affluent in the central areas, there are MANY other areas of the city that are affordable, you just end up using public transport for longer durations.

I've lived in the area my entire life and I just get sick of these misinformed positions people have that have never lived here and seem to think that from movies everyone lives in a glass-encased high rise with a Maserati waiting in the basement garage.

Yes, my SSDI is probably higher than someone's in Iowa because it was based on my last 2-3 years salary in NYC but it's still one quarter of what I was making over a decade ago meaning it's probably 1/6th of what my salary would have been in the year 2014.

I could still live "on the coast" in the larger meaning by moving somewhere like Vineland, NJ -- 40 miles southeast of Philadelphia, but I'd buy a car and all the accompanying expenses (and annoyances) that come with that and have to drive an hour into the city to do anything enjoyable, so what's the point in those cash savings?

fyi, I can't even move closer to my family because they live in the one county that has the highest median income in the entire US so like I could afford a one-bedroom apartment there, much less add on a car. And same with my one brother -- the county he lives in is the highest income in North Carolina, though amusingly that's still half of what it is at my parents in Northern Virginia. Meanwhile I live in an urban gentrifying neighborhood that via census tract information (meaning zipping in on my specific neighborhood and not the entire city number) is still less than where my two parts of my family lives, plus I don't have to own a car because I am not allergic to public transport.

Basically you'd need to tell me how much you spend on housing plus auto costs for me to tell you if you could afford to live where I do. Auto costs IMO are key. Also, if I was shacked up with a partner in my neighborhood I could obtain a MUCH nicer apartment with totally new renovation job. So Topeka and Tulsa -- how much is a decent one-bedroom rental DOWNTOWN and then add in an average car's yearly cost -- not just the payments.
« Last Edit: January 12, 2014, 01:36:04 PM by Miss Philicia »
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #66 on: January 12, 2014, 02:08:58 PM »
A One Bedroom Apt. renovated and new go's for about $350 to $450 depending on what you want

a Two Bedroom Apt.  w/ the same as above go's for about $600 to $800 again depending on what you want here in ABQ-metro......

sure, we all want more money or wish or SSDI was larger, but for some in other parts of the country it's not enough

and there is always subsidy's you can get that will help (if your savvy enough to find them)

I do understand the back to work thing (to supplement your income) if your SSDI isn't enough each month

but, really?    is it worth the risk of doing so?    most of us just accept the fact that were disabled and don't try

to go outside of the rules of disability ( if it isn't enough to live on)

go find some subsidy like HUD, VETHUD, sec 8


HUGS

DEN
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #67 on: January 12, 2014, 02:44:28 PM »

A One Bedroom Apt. renovated and new go's for about $350 to $450 depending on what you want

a Two Bedroom Apt.  w/ the same as above go's for about $600 to $800 again depending on what you want here in ABQ-metro......

sure, we all want more money or wish or SSDI was larger, but for some in other parts of the country it's not enough

and there is always subsidy's you can get that will help (if your savvy enough to find them)

I do understand the back to work thing (to supplement your income) if your SSDI isn't enough each month

but, really?    is it worth the risk of doing so?    most of us just accept the fact that were disabled and don't try

to go outside of the rules of disability ( if it isn't enough to live on)

go find some subsidy like HUD, VETHUD, sec 8

Edited to add:   even some ASO's have it, so be proactive about it!


HUGS

DEN
"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: Working while on SSDI-bad idea
« Reply #68 on: January 12, 2014, 02:48:15 PM »
A One Bedroom Apt. renovated and new go's for about $350 to $450 depending on what you want

a Two Bedroom Apt.  w/ the same as above go's for about $600 to $800 again depending on what you want here in ABQ-metro......

Downtown, or close to downtown. Not 30 miles from the city center.  And if you are taking those rental prices 20-30 miles out from the city center with no public transport how much would you add in for the monthly expense of car? Nothing fancy, but nothing that will break down every six months either. Add those costs in and you're probably around what I pay for rent living within walking distance (one mile) from the city center of a major city "on the coast". Yes, I pay for public transportation but on disability and under 65 it's significantly reduced fro $2.50 normal fare to $1 each way. I don't worry about fluctuating gas prices, inspection fees, license fees, and the inevitable unexpected high maintenance costs.

ps: I've not tried to earn money either over or under the table the entire time I've been on SSDI -- 1) simply because I'm afraid of messing things up and 2) didn't have the ability health wise for the first 4 years and definitely not the last 4 years; that leaves 3 years where I possibly could have done something -- obviously not ideal at any rate
« Last Edit: January 12, 2014, 02:56:38 PM by Miss Philicia »
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #69 on: January 12, 2014, 03:16:15 PM »


ps: I've not tried to earn money either over or under the table the entire time I've been on SSDI -- 1) simply because I'm afraid of messing things up and 2) didn't have the ability health wise for the first 4 years and definitely not the last 4 years; that leaves 3 years where I possibly could have done something -- obviously not ideal at any rate

Yeah, I hear ya, I've never really been able to work snice my SSDI, just when I feel good something always happens that puts me right back to where i was, I just rencently got a fugal-throat & Esophageal infection that lasted for about 2 weeks, and had to change all of my meds, as none of them were working ( like Before) also, my PTSD always comes back at me when I least expect it, not to mention all of my other underlying health problems......

HUGS
DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #70 on: January 14, 2014, 07:25:58 PM »
One-bedroom apartment here runs about $350-$450, utilities included. You can even get a 3-bedroom place with garage and a yard for about that, if you know the owner.

And five miles from our "downtown" is farmland in all directions.  :D  Plus, our downtown area is not a happenin' place. Nowhere in Topeka is a happenin' place, if you know what I mean. Our downtown is a barren wasteland after 5pm.

Public transport here is a joke. You have to have a car to get around. If I lived in an urban center with great public transport, ditching a car would be the first thing I'd do. Why have what you don't need.

One can live cheaply anywhere. I know in NYC you can get space in a flophouse for $10/day. It's all in what you are willing to compromise when it comes to livable spaces.

To clarify, when I say "on the coast" I mean major metropolitan areas. I know one can find pockets of cheap in any state. One just has to have familiarity with the terrain, so to speak. Personally, I know I could not uproot myself and just plop down in an unfamiliar area without incurring extra expenses. I would have to do some major research to find that elusive downmarket sweet spot of affordability and liveability.

Heck, there was a time I was living in a spacious 4-bedroom home with detached garage and large yard for $250/month and had a ten-minute commute to my job. At the same time, one of my brothers was paying $1,200/mo. for his digs in Nutley NJ. His accommodations were smaller than my two-car garage, but he had a lovely view of the New York skyline and a two-hour daily commute. Neither of us would trade lives with the other.
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Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #71 on: January 14, 2014, 07:50:51 PM »
Neither of you have told me what you pay in monthly car (and associated costs) per month.
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #72 on: January 14, 2014, 09:08:10 PM »
Neither of you have told me what you pay in monthly car (and associated costs) per month.

ok I'll bite  :D

Truck note,  auto Ins. and gas= comes to about $418 a month ( there is little to no maintenance repair cost on a new one) at least for the 1st 5yrs. or 100K miles  ;)

oh BTW, I gots to have my ride, public transportation here ABQ-metro really isn't very good
so it's affordable and worth it for me  ;)

HUGS

DEN
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Offline phildinftlaudy

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Re: Working while on SSDI-bad idea
« Reply #73 on: January 14, 2014, 10:07:47 PM »
It would be difficult to live in South Florida on SSDI alone without some type of subsidies for most people receiving SSDI.....

According to my last Social Security statement, if I became disabled "today," my monthly benefit would be about $1,700.

Rent where I live (which is North Miami - about 10 miles from the city center - Miami) is $800 month for a one bedroom w/ a balcony - mainly lower working class neighborhood....  Downtown Miami rents - in "safe" areas run $1,300 - $2,000+ month. If you go to a "rough" area (i.e. gunshots, drugs, roaches) you might be able to get an unsubsidized apartment for $850 or $900 a month.

My "partner" has HOPWA, so his rent in the same building I live in is around $140 month (of course his monthly SSDI and SSI benefit only comes to about $800 month).

Public transportation here sucks - really sucks....

Car note for my car is $350 month; car insurance for full coverage w/ minimal coverage amounts is $145 month ($1,740 a year - YIKE!!! And that is w/ USAA, GEICO was much higher when I had it)... Gas is $3.40 a gallon... Hard to say what I would pay if I was on disability and not driving back and forth to work everyday - but right now I pay about $180 month.... So, "regular" car expenses run $675 month, plus a little for regular maintenance).

I would be able to survive on SSI here in South Florida - given my current "estimated" benefit - but it would be a tight squeeze and I would definitely have to change my lifestyle significantly.

I would not be eligible for food stamps - so, I would be putting out about $400 a month on food; cable/Internet runs about $150 month; cell phone $40 month; electric is about $100 month..... I also have student loan payments - but those could be adjusted to an income sensitive plan...

Total it up and my "base" expenses using current standard of living run about 4$2,165  --- and that is without any extras (entertainment, clothing, etc.) - So, the math wouldn't work to maintain my current lifestyle on disability.
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
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11/12   549    35  <20
02/12  1,102  42  <20
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #74 on: January 15, 2014, 01:05:58 AM »


According to my last Social Security statement, if I became disabled "today," my monthly benefit would be about $1,700.




you wouldn't get the 1,700 a month, you would only get  1,569 as you would be stuck paying for your medicare premium of $104 like I have to, that's about what my SSDI is every month...
but I'm fortunate I live with Bob, and he makes a little less that I do each month

HUGS
DEN
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Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #75 on: January 15, 2014, 08:18:48 AM »
ok I'll bite  :D

Truck note,  auto Ins. and gas= comes to about $418 a month ( there is little to no maintenance repair cost on a new one) at least for the 1st 5yrs. or 100K miles  ;)

oh BTW, I gots to have my ride, public transportation here ABQ-metro really isn't very good
so it's affordable and worth it for me  ;)

HUGS

DEN

So then with the rent amounts previously quoted you are paying the same, or a bit more, than I do to live in the middle of a major US city. Thanks.


I would be able to survive on SSI here in South Florida - given my current "estimated" benefit - but it would be a tight squeeze and I would definitely have to change my lifestyle significantly.
 

You poor thing. Anyone that goes on SSDI after having a relatively high paying job does that.
« Last Edit: January 15, 2014, 08:24:11 AM by Miss Philicia »
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #76 on: January 15, 2014, 09:13:50 AM »
So then with the rent amounts previously quoted you are paying the same, or a bit more, than I do to live in the middle of a major US city. Thanks.



Yup, your correct  :D

HUGS

DEN
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Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #77 on: January 15, 2014, 10:40:54 AM »
It would be difficult to live in South Florida on SSDI alone without some type of subsidies for most people receiving SSDI.....

According to my last Social Security statement, if I became disabled "today," my monthly benefit would be about $1,700.



Phil, I hate to break it to you, but

You would not be able to afford your HIV/AIDS/MEDS even with medicare part d,
as you would be a huge donut hole with part d. ( like I'm)

 you would have to use the VA to get all of your meds for $8 or you would have to go to your local ASO for help with housing, Meds and what ever else they could provide you with...

so that $1,700 or adjusted  $1,569 after you pay your medicare premium wouldn't go very far at all, you always could apply for SEC 8 HUD but that has a waiting list of about 2 to 5 yrs.

just saying  :D

DEN

HUGS
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Offline Miss Philicia

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Re: Working while on SSDI-bad idea
« Reply #78 on: January 15, 2014, 10:53:27 AM »
Phil, I hate to break it to you, but

You would not be able to afford your HIV/AIDS/MEDS even with medicare part d,
as you would be a huge donut hole with part d. ( like I'm)

 you would have to use the VA to get all of your meds for $8 or you would have to go to your local ASO for help with housing, Meds and what ever else they could provide you with...

so that $1,700 or adjusted  $1,569 after you pay your medicare premium wouldn't go very far at all, you always could apply for SEC 8 HUD but that has a waiting list of about 2 to 5 yrs.

just saying  :D

DEN

HUGS

Not sure that is an accurate statement though obviously can vary by state -- my Medicare Part D premium is paid by the state, I never see a bill. Though my SSDI is on the high side I still qualify for "extra help" http://www.ssa.gov/prescriptionhelp/

I end up paying ~$80 in copays per year, that's it. Are you saying the VA charges $8 for each prescription regardless of whether or not it's generic or non-generic? That would cost me $80/month or $960 annually - that's a lot.

IMO the real issue is taking care of the 20% in Medicare A  & B that isn't covered for medical services, lab costs, hospital stays, etc. Aside from the $104 that is deducted from my monthly SSA payment I also pay $98 to the Commonwealth of Pennsylvania for what is essentially Medicaid as my secondary insurer -- but I have to pay this because I don't qualify on income to have have it at no cost. But the coverage is really great -- I never pay a copay to see a doctor, every specialist except one dermatologist has accepted me as a patient, and I've not seen a single bill from the five out-patient hospital procedures I've had in the past 3 years, all of which included general anesthesia.
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Offline Ann

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Re: Working while on SSDI-bad idea
« Reply #79 on: January 15, 2014, 10:56:55 AM »
It might be an idea for you guys to stop hijacking Betty's thread with this discussion about managing the cost of living while on disability. How about starting your own thread about it?
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Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #80 on: January 15, 2014, 05:58:46 PM »
Neither of you have told me what you pay in monthly car (and associated costs) per month.

I'm not a good example.

These days, I pay cash for all our vehicles. I buy older low-mileage vehicles and drive them for years. I, or my son, do most all the repairs, including transmission swaps. I am able to purchase new parts at a discount and I frequent junk yards for non-essential items. This prevents me from having to pay shop rates for parts and repairs.

I track our vehicle costs per mile, not per month.

The most expensive personal-use vehicle costs us $89/month to insure with full coverage. I bought it for $3,000 and have owned it for three years. I put maybe two tanks of gas in it a month.  As of now, it has cost us about $0.12/mile to operate. This includes purchase price, taxes, fluids, tires, repairs, insurance and gas over the lifetime of the vehicle. Most of our vehicles per-mile cost drops over the lifetime of the vehicle. (I track it this way as it gives me a good indication of whether a vehicle is cost-effective to repair or replace.)

Converting from miles to months, averaging about 10,000 miles a year, this works out to about $100/month.

The last vehicle I financed was back in the early '90's. IIRC, It cost me $250/mo for 36 months. So if I were financing a vehicle today, I'd probably be incurring a similar additional cost.

So that would put me at $350/mo. for a vehicle.

I think this value is very low due to the reasons I have given. But there it is.
Reality is frequently inaccurate.

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #81 on: January 15, 2014, 06:58:12 PM »
Not sure that is an accurate statement though obviously can vary by state -- my Medicare Part D premium is paid by the state, I never see a bill. Though my SSDI is on the high side I still qualify for "extra help" http://www.ssa.gov/prescriptionhelp/


I went to that web link you posted just to see if I qualified for Medicare extra help

nope, I don't qualify, after I put in my monthly income they said no  :-\

so no part d medicare for me EVER!

HUGS

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

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #82 on: January 30, 2014, 06:06:28 PM »
Ok update...I was told today my work review is now in Chicago and it could be from anytime to a couple more months before I know the outcome.  I don't like this, not one bit....
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #83 on: January 30, 2014, 06:34:05 PM »
Ok update...I was told today my work review is now in Chicago and it could be from anytime to a couple more months before I know the outcome.  I don't like this, not one bit....

Now That really dosen't sound too good, I hope SSA dosen't make you pay all of your overage

I hear they will take it out of your SSDI, but if they do, you can always slow up the process

by filing appeals  :(

as some of our forum member's had to do this, maybe some of them will chime-in about this

and I also hope it's comes out in your favor Betty, I'm rooting for ya, as are many other(s)  :)


HUGS

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

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #84 on: January 30, 2014, 06:42:55 PM »
Im sorry Betty . This has been rocking on for over a year now right ?

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #85 on: January 30, 2014, 06:46:15 PM »
Now That really dosen't sound too good, I hope SSA dosen't make you pay all of your overage

I was over by $24 for one month, because of being paid for a holiday.

Im sorry Betty . This has been rocking on for over a year now right ?

It seems like it, doesn't it?  It's been six, almost seven months.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #86 on: January 30, 2014, 06:56:46 PM »
Grrr...
Please vent my way anytime Betty.
31 years hiv+ (oct. 2013) with a curtsy.

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #87 on: January 30, 2014, 07:04:51 PM »
I was over by $24 for one month, because of being paid for a holiday.

It seems like it, doesn't it?  It's been six, almost seven months.

Betty, I'd make sure you have documentation of that $24 overage, SSA has a horrble habit of making up numbers with very bad accounting practice(s) and SSA dose get called on this allot  ???

but it's up to you to caught the mistake (if SSA isn't correct in the accounting part)  of all of this mess  >:(

When I 1st went on SSDI I had to dispute some of the bad accounting about my benefits

it landed me an extra $200 a month of my SSDI benefit


HUGS

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

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #88 on: January 31, 2014, 05:01:45 AM »
Betty, I'd make sure you have documentation of that $24 overage, SSA has a horrble habit of making up numbers with very bad accounting practice(s) and SSA dose get called on this allot  ???

but it's up to you to caught the mistake (if SSA isn't correct in the accounting part)  of all of this mess  >:(

Oh, after having been on the benefit merry-go-round for years, I had learned to keep 4 and 5 copies of things.  So of course I have documentation of the overage.  And mailed and faxed everything to SSA a few times. 

Chicago is the payment center, so not sure what the review would be doing there, as I understand they don't do reviews.  Who knows.  I believe I have the phone number and may call them today when I get home from work.  Of course that doesn't mean they'll tell me anything.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #89 on: January 31, 2014, 10:37:15 AM »
Oh, after having been on the benefit merry-go-round for years, I had learned to keep 4 and 5 copies of things.  So of course I have documentation of the overage.  And mailed and faxed everything to SSA a few times. 

Chicago is the payment center, so not sure what the review would be doing there, as I understand they don't do reviews.


Humm my SSA payment processing center comes outta of Atlanta, GA. and I just found out that my VA comes out of ALT as well...

Yeah, the Govt. loves paper work, and so dose the VA, I'm finding that out on a daily basis snice DEC 2013  ::)

fight them with as much paper work as you can find Betty, some or most of the SSA's CSR's can be very lazy
and don't always like to look up things,
 like they are paid to do  >:(

HUGS

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

Offline BT65

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Re: Working while on SSDI-bad idea
« Reply #90 on: March 08, 2014, 03:26:55 AM »
Well, it's been a long, loooong 8 months.  Finally, I got news in the mail yesterday.  SSA has decided my disability should continue (for now).  So, good news!  And it only took the White House, my congresswoman, and senator, to get things done. 

I shared with someone yesterday, that I had e-mailed the White House 3 times.  On their website, there is a link to use to send an e-mail.  Anyway, I must have sounded desperate, as someone from the White House contacted me.  I have her voicemail saved on my phone.  The White House contacted SSA twice, as someone from the admin building at SSA in Baltimore, contacted me twice.  It's a funny story that's kinda long to go into, but the first time the guy from SSA called, we only talked a few minutes.  The last time he called, we talked for about an hour.  I was able to better explain my situation to him.  He said he would talk with the lady doing the review. 

I also contacted Senator Donnelly's office, and had a caseworker there, and Congresswoman Walorski's office, and had a caseworker there.  I did not vote for Walorski, but she is the congressperson for this district, and congress people are usually the ones to handle federal agencies, while senators usually handle state agencies. 

Anyway, it's been a horribly long process.  I no longer work at the ASO, that ended January 31, my choice.  I got terribly bored sitting around, and accepted a very, very part-time job facilitating a women's HIV support group.  It will only be once a week, but will also include lining up events, planning any outings etc.   While the per hour pay is better, of course it is going to be many less hours, and can mostly work from home, other than going to the group meetings.

So, we'll see.  Thanks everyone for the input, and outpouring of support.  People who know me were not surprised I got government officials involved, while people who do not know me well were a little surprised.  But, I tell people, contact the government officials, after all they (are supposed to) work for us.  Even though they may not have "officially" solved this issue, I'm sure their input didn't hurt things any.  Thanks all!  I owe many here a debt of forever gratitude.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: Working while on SSDI-bad idea
« Reply #91 on: March 08, 2014, 07:37:18 AM »
I'm going to have to stop at a simple Congratulations before I slip into a rant about healthcare in America . I'm celebrating with you Betty ! . 

Offline denb45

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Re: Working while on SSDI-bad idea
« Reply #92 on: March 08, 2014, 09:50:49 AM »
Hey Betty, Congratulations  :D

The squeaky wheel always get's the grease, the louder it is, the better your changes
of getting it fixed, replaced or repaired


HUGS

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

Offline emeraldize

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Re: Working while on SSDI-bad idea
« Reply #93 on: March 08, 2014, 12:23:43 PM »
This is great news. Congrats. Can you bill everyone for your hours spent advocating and stressing? Oh right , that would start the cycle all over again. You got TWO big breaks this quarter, Betty !

Offline britchick

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Re: Working while on SSDI-bad idea
« Reply #94 on: March 08, 2014, 01:58:28 PM »
Im so glad to hear your fantastic news.Well done and thanks for showing us all to never give up.!!!
Good luck on your new venture and please rest up until you recover from your surgery.

britchickxx

Offline mitch777

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Re: Working while on SSDI-bad idea
« Reply #95 on: March 08, 2014, 02:47:33 PM »
Way to go Betty, way to go!  ;)
31 years hiv+ (oct. 2013) with a curtsy.

Offline intaglio

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Re: Working while on SSDI-bad idea
« Reply #96 on: March 08, 2014, 04:34:12 PM »
Congratulations on both your overcoming this headache and landing your new gig.
Reality is frequently inaccurate.

Offline drewm

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Re: Working while on SSDI-bad idea
« Reply #97 on: March 21, 2014, 09:28:56 PM »
CONGRATS  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline thunter34

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Re: Working while on SSDI-bad idea
« Reply #98 on: March 22, 2014, 02:14:40 AM »
Whew.  So glad for you.  Long time coming.
AIDS isn't for sissies.

 


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