just read switching jobs topic,opinion needed: stay employed vs disability

[motherinneed]

« Reply #22 on: Today at 12:02:26 PM »
   
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I am a bit off track on your topic concerning switching jobs so maybe it is best to start a new topic.. my son has a very stressful job with lots of shift work and he does not take his meds at the same time each day because of this job. He wanted to continue working up to today when he asked me how to go on disability. I need some opinions on this matter. In reading some of the 'switch job" replies I saw one that said keeping a job helps keep one's mind occupied and not constantly focusing on the HIV diagnosis. I agree with that 100%. But to see my son tired and stressed and not adhering to his medication schedule is stressing me out. Please give me input as to the two sides of this issue. IF he does decide to apply for disability what are the implications of that? Thanks. Bless you all for being there to h help me with my concerns. 

[Miss Philicia]

What do you mean exactly by "what are the implications of that"? 

[twofires]

get to where its a normal thing to simply take the meds, without giving it too much thought

mine are down to once a day, that does make it easier...

while being poz has become a part of what I see when I look at myself in the mirror, mental or real, I call myself by my trade. which is to say, I am a leathersmith.

switching jobs/trades does not help bolster one's sense of self definition

advancing in your trade, now thats the thing to do!

[living eyes]

When I first was diagnosed, it was severe, was off work for a couple weeks, then went back, and was still really thin.  I looked awful, but I was up for a general manager's position for a hotel where I was working at the time.  So in an attempt to go take the General Manager's qualification test in Atlanta, GA (I'm from Kentucky).  I checked into the hotel room, was on my way to the training session when I blacked out.  Evidently I checked into another hotel room, got a traffic citation for going the wrong way on a one way street, and ended up being found beside the road in my car, thinking I was going home.  When I was found by the sheriff's office, I was almost in Lousiana.  My dad and uncle came to get me, and I ended up back in the hospital, and was "advised" to go on disability.

That was a mistake.  If I had been in my right mind, I would have just stepped down from that position, and took another position with the hotel.  I don't fault the doctors for advising me to go on disability, but I think they were wrong.  I take my meds every day, and have even been taken off a few since I was diagnosed  back in 2003.  My cd4 count is good, and my doctors are impressed with my progress, BUT advise me that I shouldn't go back to work, because it's hard to get back on disability if I do.  I have checked into this matter myself, and have read that you do have a certain window that you can work, and you may have to give up some benefits after 9 months, but as long as you don't go over a 5 year period, then you don't have to reapply for disability. 

Now I'm on Medicare with part D plan through an independent company.  I am basically stuck at home taking care of my parents, since my mother has physcological problems, and my dad is getting ready to have knee replacement surgery this thursday.  I am also having to care for my niece, since my brother cannot comprehend the fact that his daughter needs some attention from him, and now she is having abandoment issues (my brother and his wife are divorced).  My parents gave him some property, a vehicle and a mobile home to live in, and he has yet to pay the first payment on any of these items, and lets his new girlfriend drive the truck, which is in our parent's name and insurance.  When my friends call me wanting to go somewhere, most of time I can't because I am having to drive my mother somewhere (she's not allowed to drive anymore, since her car accident last fall), or having to baby-sit my niece on weekends while her mother works.  I am getting a new vehicle this week, but having to pay for it myself, because my brother has basically broke my parents. With the issues of my personal life, being HIV positive, and having the added stress of this situation, puts me into a depression state that sometimes makes me want to run away from it all. And I really think my parents feel that by me doing all of this for them is going to keep me alive longer.  But I constantly remind them that there will possibly come a time that I won't be able to do all of this anymore, and I know for a fact that it will devistate them, and my niece.

My advice, get him on a daily regiment where he takes his medications regularly.  Tell him that until he gets to the point where he can't work anymore, then file for disability.  Depending on the situation, he may feel that he is making the most out of his life while he still can.  I regret the decisions I have made in regard to disability and the fact that I have a college degree in business management, and now it's not only affecting me mentally, but I am afraid it will also start affecting me health wise also.

[thunter34]

I am glad this is being discussed here now.  When I was first diagnosed, my health was not super good.  No OI's like menengitis or anything, but there was enough to keep me from being able to work at the time.  The people at my ASO seemed all poised to want to put me on disability right off the bat.  Then I got better enough to work.  Then I got really sick from meds for quite some time (a few months, all things told).  So I went off work, back on work, off work again, then back.  I was wondering the same things at the time- and still do, really.  Does getting on disability harm your ability to get back into the work force?  Does working again harm your ability to get on disability again? etc. 

HIV/AIDS is a tricky thing in that arena.  It is not quite the same as, say...losing limbs and such.  My experience and what I have seen seems to reveal a frequent pattern of back and forth.  I would think that trying to resume work after going on disability and then having to possibly get it again would represent someone who was trying to stay 'off the dole' as much as possible- and that the disability powers that be would be able to recognize it as such.  Still, I have also heard that returning to work can create a barrier to getting back on it.

I'd like to see more replies from others who have actually gone through all of this to find out more.  This is something I brought up in the current 'what would you like to have been told' thread.  The financial side of this whole HIV business is very scary.  My savings are kaput.  401(k) and such...LOL.  All gone now.  I have been working some, but have never been able to maintain the work load I once had.  Ive also kind of had to make a mental shift in the employment area.  Gone are most thoughts of being top dog in any business realm.  Mostly now, I just think in terms of staying afloat without drowning.

[Miss Philicia]

Does getting on disability harm your ability to get back into the work force?  Does working again harm your ability to get on disability again? etc. 

Theoretically no, practically maybe.  The big caution thing is that with HIV you worry about health coverage, so once you're on Medicare you worry about (assuming one is well enough again) that transition back to private insurance.  But here's the catch, once you go ON SS disability you must wait TWO years to qualify for Medicare.  Some states, like NY, have programs where their ADAP will pay for your private insurance premium.  I know most states do not.  They don't in Pennsylvania.  But once you go back to work there's some pretty decent grace period where 1) you can decide you really aren't ready or well enough to work and go back on SSD or 2) stay on Medicare long enough until your new job's insurance kicks in.  I'm quite sure of this, but of course double check on this.

It's called "Ticket to Work" and was part of Clinton's reform stuff in the late 90's:

http://www.ssa.gov/work/Ticket/ticket_info.html

Now for what I *really* think:  they need some special stuff for HIV, that encourages re-integration in the work force either part-time without dangering some supplemental income (they do this now but it's VERY minimal and you always have to worry about exceeding it) and of course messing up your Medicare health coverage.  Let's face it, work = socialization and that's very important for HIV infected individuals.  Instead they're faced with an either/or situation.  Once you re-enter the work force you're also probably far enough advance along with HIV where you need to go to the doctor's office.  Let's face it -- not every employer is willing to make such accomodations.  When you only have to go every other month or every 3 months that's easy to pull off, but going twice a month or more it's not.

[Dan J.]

Going on disability doesn't happen overnight. It takes 6 months from the time you apply with Social Security to start drawing a check.  Some people are eligible for SSI until the 6 month period is up.  I suggest you try to get him on a schedule to take his meds everyday. Just because a person is HIV+ does not mean they will meet the criteria to start drawing SSDI.

You can work and still draw an SSDI check every month. You can make up to 820.00 a month and still keep your disability check coming. I try to stay in the 550.00/600.00 range because Social Security will watch your earnings  and if you consistently earn at the 820.00 limit they will start to question if you are truly disabled or not.  There is a program called the Ticket To Work   http://www.yourtickettowork.com/ this link will tell you all about it.

There is a 6 month trial working period. You can earn as much as possible during that time and still draw your full SSDI check. After the 6 month period you will have a review to determine if you have  gainful employment. If you are deemed as gainfully employed your SSDI benefits will stop. If you get sick again and can not work you can be fast tracked back on to SSDI.

Hope this helps.

Dan J.

[Nico]

I will call you Mom.

As the others have wisely suggested, please have you son draw up a schedule for meds.  If need be, have him see his doc so he can explain his situation.  

If he is healthy he should try every avenue to stay off disability.  It is not retirement and after being on it personally for five months years ago at 100% of my pay, I wanted to go back to work very badly and I did looking like death, but fighting and winning.  

You are being a good mom to your son, but he should try and work this out.  I did and it made me stronger.  That is only me speaking.  Also, please give yourself some time/break.  Talk to us and talk to people you feel comfortable with.  You are both sharing the pain.  Good luck and my thoughts are with you.

Better days ahead!
Roger

[Miss Philicia]

Some of this will be all Greek to people.  If you don't know the differences between SSI, SSDI, Medicare and Medicaid just ask.  Dan sounds like he explains stuff better then me but I can try and answer too.  Otherwise I'll assume you can use google.

But yes thunter, it would be nice if this was explained well at an ASO, or at least in a brochure specific for HIV at the state level.  The information is all out there in some form, but it's kind of impossible to understand or seems overwelming without someone there to reply to questions.  They don't want it to be easy I guess. 

[living eyes]

Dan J, that's the problem I have.  If I took a job, and have been offered one, that works with sales, where you get a bi-weekly paycheck, plus commissions. If the regular pay + commissions go over the allotted $820.00 a month, then you lose all benefits, including medicare.  And what if the offer also included full medical benefits?  I would hate to work for up to so many years, not then at the time it ends for fast track back to SSDL, and have to go through the whole process again.  If I was feeling good and my medical condition had not changed I feel I should go on working.  I would not want to quit a job, then go back to SSDL, before the 5 year (I think) grace period.  I mean I really feel that if I don't need it at the time, then I should not take it.  I don't want to be one of these people out here that run back and forth to SSDL, when I feel I could work for at least 10 more years, provided my health holds up. 

I think for people younger than myself, and this is IMO, that now that we have the medications to keep us going and prolonging our lives, that you should continue to work, seek other employment if not happy with the job you are at, just whatever.  For those unlike myself, who did continue to work, with minimal assistance medically, then I applaud you.  Don't let your diagnosis get you down and put you in a position that many people, myself included, have put themselves in.  But that's also not to say that if the situation warrants getting signed up on SSDL, then by all means do it.  Just don't be in such a hurry to do it, if at the present time you do not need to.

[thunter34]

It seems to me that there needs to be some sort of staggered system after one passes this $820.00 mark.  I used to work in social services for people with developmental disabilities & it was the same way.  They were put into an either/or situation:  sit on their cans and have everything provided, or go to work and end up having to spend all of their earnings just on their medicines.  It was so disheartening.

Doesn't the idea of a staggered/siding scale system make sense for those who cross over the $820.00 mark?

[Miss Philicia]

Yeah, try getting the federal and state governments to alter things.

[Robert]

Work gives value and meaning to our lives.  Your son should try to adjust his schedule so he can take his meds and continue to work.  Perhaps he needs to tell his boss "no" everyonce in awhile and just take some time off to relax.

robert

[allopathicholistic]

It seems to me that there needs to be some sort of staggered system after one passes this $820.00 mark.  I used to work in social services for people with developmental disabilities & it was the same way.  They were put into an either/or situation:  sit on their cans and have everything provided, or go to work and end up having to spend all of their earnings just on their medicines.  It was so disheartening.

Doesn't the idea of a staggered/siding scale system make sense for those who cross over the $820.00 mark?

Many thanks for your input, Tim. Sometimes i truly wanna cry over this 

To your last question, my answer right now is "yes, it makes sense" to try out and then refine a sliding scale system of some sort. sadly, in this equation, the only simple thing about reformation is the word itself          someone please help me to see the light. please. thanks   

They don't want it to be easy I guess. 

very very sad if true    Two can play hardball y'know, meaning i could be a total a-hole and just be a bon-bon-eating moochmeister (trust me, that AIN'T me). i know those words are ugly. no, fugly. sorry everyone. excuse me while i screeeeam in frustration   

[northernguy]

Theoretically no, practically maybe.  The big caution thing is that with HIV you worry about health coverage, so once you're on Medicare you worry about (assuming one is well enough again) that transition back to private insurance...

I don't mean to make this political, but my HIV diagnosis has made me value Canada's public health system a whole lot more than I ever used to!  It's not perfect but...My heart really goes out to those having to deal with these insurance issues at the same time as fighting HIV.

[AlanBama]

This is only my opinion, of course, but I speak from experience, having been on disability since 1995.   I have worked part-time since about 1998 or 1999, and in 2001, I "gave up" disability and attempted to go back to work full time.
I did that for 10 months, and was able to re-start my disability benefits without too much difficulty.

My advice to anyone is to think of disability as a final resort.   This is nothing to "aim for".  You've heard the old saying "once you get in the SYSTEM, they keep you down".   It is very true.   You are limited to what you can earn, and must report your earnings to them.

I fought going on disability tooth and nail, it was a "Have To" situation in my case, and I was approved immediately due to a prognosis of "Terminal within 6 months".   I understand that this is not the case any longer, just because you have HIV you are certainly not entitled to qualify for disability.  You do have to wait approx. 6 months to receive your first check (may vary, depending on the date they settle on as your date of eligibility).   You will not be entitled to Medicare for 2 years.    That was a hard 6 months for me, and if I had not had private medical insurance and Ryan White money to pay the premiums, it would have been a hard 2 years to wait for Medicare.  Also, at the time I had a partner who took care of me.

Work as long as you can.   Taking meds and dealing with the side effects are no fun, but you have to do that whether you are at work or at home.   At work, you are receiving a pay check.

Just my 2 cents worth.......

_____________________________________
this is copied from the Social Security Administration's Website:

 Question
  I am receiving Social Security disability benefits.  Will my benefits be affected if I work and earn money?
 
 
  Answer
  We have special rules called "work incentives" that help you keep your cash benefits and Medicare while you test your ability to work. For example, there is a trial work period during which you can receive full benefits regardless of how much you earn, as long as you report your work activity and continue to have a disabling impairment.

The trial work period continues until you accumulate nine months (not necessarily consecutive) in which you perform what we call  "services" within a rolling 60-month period. We consider your work to be "services" if you earn more than $640 a month in 2007.  For 2006, this amount was $620.  After the trial work period ends, your benefits will stop for months your earnings are at a level we consider "substantial," currently $900 in 2007. For 2006, this amount was $860.  Different amounts apply to people who are disabled because of blindness.

For an additional 36 months after completing the trial work period, we can start your benefits again if your earnings fall below the "substantial" level and you continue to have a disabling impairment.